In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

Significant challenges arise for clinical care teams when a patient or surrogate decision-maker hopes a miracle will occur. This article answers the question, “How should clinical bioethicists respond when a medical decision-maker uses the hope for a miracle to orient her medical decisions?” We argue the ethicist must first understand the complexity of the miracle-invocation. To this end, we provide a taxonomy of miracle-invocations that assist the ethicist in analyzing the invocator's conceptions of God, community, and self. After the ethicist (...) appreciates how these concepts influence the invocator's worldview, she can begin responding to this hope with specific practices. We discuss these practices in detail and offer concrete recommendations for a justified response to the hope for a miracle. (shrink)

The capacity to designate a surrogate is not simply another kind of medical decision-making capacity. A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC (...) for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases. That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. (shrink)

Deep brain stimulation (DBS), a surgical procedure involving the implantation of electrodes in the brain, has rekindled the medical community’s interest in psychosurgery. Whereas many researchers argue DBS is substantially different from psychosurgery, we argue psychiatric DBS—though a much more precise and refined treatment than its predecessors—is nevertheless a form of psychosurgery, which raises both old and new ethical and legal concerns that have not been given proper attention. Learning from the ethical and regulatory failures of older forms of psychosurgery (...) can help shed light on how to address the regulatory gaps that exist currently in DBS research. To show why it is important to address the current regulatory gaps within psychiatric DBS, we draw on the motivations underlying the regulation of earlier forms of psychosurgery in the US. We begin by providing a brief history of psychosurgery and electrical brain stimulation in the US. Against this backdrop, we introduce psychiatric DBS, exploring current research and ongoing clinical trials. We then draw out the ethical and regulatory similarities between earlier forms of psychosurgery and psychiatric DBS. As we will show, the factors that motivated strict regulation of earlier psychosurgical procedures mirror concerns with psychiatric DBS today. We offer three recommendations for psychiatric DBS regulation, which echo earlier motivations for regulating psychosurgery, along with new considerations that reflect the novel technologies used in DBS. (shrink)

Women’s pain remains underappreciated, undertheorized, and undertreated in both medicine and theology. The ascetic practices of women in pain, however, can help Christians understand and navigate their own pain and suffering, particularly because they are experienced in the context of chronic illness and disability. In what follows, I argue that Christians would do better to view the pain that accompanies disability and chronic illness as a potential resource for spiritual practice rather than an example of sin or evil. I begin (...) with a brief overview of the most common theological explanations for the relationship between disability and sin within contemporary Christian writings on disability. What is often neglected in these conversations is the acknowledgment of pain in the disability experience. Likewise, discussions of evil often attempt to explain the existence of pain and suffering, but rarely address the practical realities of pain. As a way to begin to remedy the lack of attention to the experience of chronic pain for those living with illness and disability, I consider what it would mean to live faithfully with pain by examining the lives of three holy women who provide examples of what it means to interpret, manage, and share their pain within the body of Christ. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

Sensitivity to interpersonal timing was assessed in mother–infant interaction. In Study 1, 3-month-old infants interacted with their mothers over television and the mothers’ audio-visual presentation was either live or temporally delayed by 1 second. Infants gazed longer when the mother was presented live compared to delayed by 1 second, indicating that they detected the temporal delay. In Study 2, mothers interacted with their 3-month-old infants over television and the infants’ audio-visual presentation was either live or temporally delayed by 1 second. (...) Mothers’ behavior was not altered by a 1-second delay in their infants’ behavior compared to a live presentation. In Study 3 and 4, the results were replicated with 6-month-old infants. Whereas infants detected the temporal delay in maternal responses, mothers likely adjusted to the delay in infant behavior. The discussion focuses on the role of interpersonal timing for detecting social contingency in dyadic and triadic communication. (shrink)

In this paper I will show how the medical image, presented to the patient by the physician, participates in medicine's cold culture of abstraction, objectification and mandated normativity. I begin by giving a brief account of the use of anatomical imaging since the Renaissance to show how images have historically functioned in contrast to how they are currently used in medical practice. Next, I examine how contemporary medical imaging techniques participate in a kind of knowledge production that objectifies the human (...) body. Finally, I elucidate how physicians ought to place the medical image within the context of the lived body so as to create a healing relationship with the patient. In all this I hope to show that the medical image, far from a piece of objective data, testifies to the interplay of particular beliefs, practices and doctrines contemporary medicine holds dear. To best treat her patient, the physician must appreciate the influence of these images and appropriately place them within the context of the patient's lived experience. (shrink)

Christians have an obligation to attend to the voices of persons who are crying out that their dignity and very lives are in jeopardy when physician-assisted suicide becomes legalized. The following essay begins with an account of the concept of “disability moral psychology,” which elucidates the unique ways persons with disabilities perceive the world, based on their phenomenological experience. The author then explores the disability critique of PAS and the shared social conditions of persons who are chronically disabled and terminally (...) ill. Finally, the author positions the disability critique within Christian moral deliberations on PAS to unearth its significance for Christian ethics. To bear witness to a compassionate God, theological and ethical judgments concerning PAS must seek perspectives from persons who claim that their dignity and even their lives are in jeopardy by the practice. (shrink)

Over one hundred years after Max Weber delivered his lecture “Science as a Vocation,” his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is little (...) room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness. (shrink)

Philosophia (Israel), 16(3-4), 333 - 344. YEAR: 1986 Extensive corrigenda Vol. 17, no. 3. -/- SUBJECT(S): Quine's second thoughts on quantifying in, appearing in the second, revised edition of _From a Logical Point of View_ of 1961, are shown to be incorrect. His original thoughts were correct. ABSTRACT: Additional tumult is supplied to pp. 152-154 of _From A Logical Point of View_, showing that being dated is no guarantee of being right. Among other things, it is shown that Quine's argument (...) to the conclusion that limiting the universe of discourse to intensional entities does not "relieve the original difficulty over quantifying into modal contexts" is incorrect; that the contradictory of that conclusion is in fact true; and that an even stronger conclusion is true, with 'abstract' replacing 'intensional'. (shrink)

An ironic work, Hume's _Dialogues_ continues to be subject to varying estimates of his reputed hostility to religion. The paper presents the _Dialogues_ as an answer to Minucius.

Disability theology has been a small but growing field over the past thirty years. This paper reviews the current methods used in the discipline and proposes ways to move the field forward. Two intersections between disability studies and Christian theological ethics are explored in particular: bioethics and critical theory. Bioethics helps to address the material health and wellbeing concerns of people with disabilities and the discriminatory attitudes about disability that stem from the medical field. Critical theory on the other hand, (...) examines disability through cultural productions that shape our ableist imaginary. Critical theory offers resources for countering or “disciplining” our imaginations. Both bioethics and critical theory offer unique entry points into disability, but each also contains limitations that reveal why disability theology must continue to engage multiple methods and discourses. (shrink)

The stories in this issue of Narrative Inquiry in Bioethics demonstrate two important things. First these stories explore the space between bodily impairment and the social structures that both enable and constrain the flourishing of those who are differently embodied. The authors of these narratives resist the dominant biomedical interpretation of their impairments, but also demonstrate their dependency upon others—social, medical, or familial others. Second, in writing these narratives, the authors are also engaged in an act of identity formation, which (...) sometimes challenge and sometimes embrace the label of disability. By telling their stories in the middle of the action of their lives— in media res, taking up or resisting the label of disability—they also demonstrate the way in which lives can be lived open to new possibilities and interpretations. (shrink)

Examines the promises and perils of bioenhancement technologies for those most vulnerable to health disparities: persons with disabilities, racial and ethnic minorities, and women.

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use of (...) genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology. (shrink)

The author argues that genetic technologies can never be fully sepa­rated from their eugenic ends. Because of this, the Church’s sexual ethic must be integrated with its social teaching to respond faithfully to ethical issues that arise with the use of genetic technologies. The author discusses, first, the Catholic opposition to eugenics from the turn of the twentieth century to the official papal condemnation of eugenics in 1930; next, the Church’s reaction to advances in DNA research in the 1950s and (...) 60s; and finally, the shift from optimism to caution from the 1970s on, as new genetic technologies emerged in embryonic stem cell research, genetic counseling, and gene therapy. The author explores both the sources on which the Church has drawn in responding to genetic advances and the social issues that should prove fruitful for con­templation in the future. (shrink)

For many persons with chronic illness and disability, medical images can come to represent their stigmatized “otherness.” A growing group of artists, however, are transforming their medical images into works of visual art, which better represent their lived experience and challenge viewers to see disability and illness differently. Although few of these artists are self-professed Christians, they challenge the Church to live into the communion to which it has been called. Using a method of correlation, Christian ethicists can find within (...) this art the potential for: creative resistance to modern deployments of biopower, a celebration of divine poiesis, opportunities for communion, and prophetic challenges to the cult of normalcy. Disability art encourages a new ethic of communion in which embodied vulnerabilities are shared, celebrated, and reoriented toward the ground of being. (shrink)

ZusammenfassungNach zwölf Jahren intensiver Forschung etablierte der Ophthalmologe Theodor Leber (1840–1917) am Ende des 19. Jahrhunderts in der Entzündungsforschung die Chemotaxis der Leukozyten. Obwohl sich seine Theorie damals reibungslos in die immunologische Forschung einschrieb, wird sein Name jedoch bis heute nur in der englischsprachigen Fachliteratur mit der Chemotaxis verknüpft. In seinem Experimentalsystem hatte Leber zwar schon Anfang der 1880er Jahre eine Theorie der chemischen Attraktion der Leukozyten beim Entzündungsprozess entwickeln können. Aber seine unkonventionelle Methodik—die Einführung von chemisch indifferentem Fremdmaterial zur (...) Auslösung einer Entzündung am Kaninchenauge—widersprach schon vom Ansatz her dem zu diesem Zeitpunkt dominant bakteriologischen Denkstil der Entzündungsforschung. In diesem Forschungsfeld hielt Leber an einer Forschungspraxis fest, die aus einer engen Verzahnung von experimenteller und theoretischer Arbeit bestand. Erst als eine Öffnung des bakteriologischen Denkstils eingetreten war, gelang es Leber seine auf losen Protokollseiten festgehaltenen Versuchsbeobachtungen in überzeugende Belege seiner Entzündungstheorie zu transformieren. Die mikrohistorische Rekonstruktion von Lebers experimenteller und schriftlicher Arbeit anhand seiner Laborprotokolle erschließt die Forschungspraxis eines Wissenschaftlers, der in der damals etablierten mikrobiologischen Entzündungsforschung kaum Anerkennung fand. Durch Verbindung der mikrohistorischen Rekonstruktion mit einer makrohistorischen Analyse lassen sich außerdem Beharrungsfaktoren im Prozess der Wissensentstehung offenlegen. Leber entwickelte eine spezifische Papiertechnik, durch die er seine experimentellen Erkenntnisse zwar mobilisierte und stabilisierte, aber nicht mit dem Fortschreiten der Wissenschaft mithalten konnte. (shrink)

ZusammenfassungNach zwölf Jahren intensiver Forschung etablierte der Ophthalmologe Theodor Leber (1840–1917) am Ende des 19. Jahrhunderts in der Entzündungsforschung die Chemotaxis der Leukozyten. Obwohl sich seine Theorie damals reibungslos in die immunologische Forschung einschrieb, wird sein Name jedoch bis heute nur in der englischsprachigen Fachliteratur mit der Chemotaxis verknüpft. In seinem Experimentalsystem hatte Leber zwar schon Anfang der 1880er Jahre eine Theorie der chemischen Attraktion der Leukozyten beim Entzündungsprozess entwickeln können. Aber seine unkonventionelle Methodik—die Einführung von chemisch indifferentem Fremdmaterial zur (...) Auslösung einer Entzündung am Kaninchenauge—widersprach schon vom Ansatz her dem zu diesem Zeitpunkt dominant bakteriologischen Denkstil der Entzündungsforschung. In diesem Forschungsfeld hielt Leber an einer Forschungspraxis fest, die aus einer engen Verzahnung von experimenteller und theoretischer Arbeit bestand. Erst als eine Öffnung des bakteriologischen Denkstils eingetreten war, gelang es Leber seine auf losen Protokollseiten festgehaltenen Versuchsbeobachtungen in überzeugende Belege seiner Entzündungstheorie zu transformieren. Die mikrohistorische Rekonstruktion von Lebers experimenteller und schriftlicher Arbeit anhand seiner Laborprotokolle erschließt die Forschungspraxis eines Wissenschaftlers, der in der damals etablierten mikrobiologischen Entzündungsforschung kaum Anerkennung fand. Durch Verbindung der mikrohistorischen Rekonstruktion mit einer makrohistorischen Analyse lassen sich außerdem Beharrungsfaktoren im Prozess der Wissensentstehung offenlegen. Leber entwickelte eine spezifische Papiertechnik, durch die er seine experimentellen Erkenntnisse zwar mobilisierte und stabilisierte, aber nicht mit dem Fortschreiten der Wissenschaft mithalten konnte. (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)