Joel Michael Reynolds

The first version of the widely used Serious Illness Care Guide produced by Ariadne Labs prompted clinicians to ask their patients: “What abilities are so critical to your life that you can’t imagine living without them?” In 2023, the program updated their guide, removing this “critical abilities” question in part due to pushback from the disability community and disability researchers. This viewpoint briefly reviews the history of serious illness communication to understand why the question originally appeared in the guide and why it was removed. Through the lens of disability bioethics, we then explore concepts such as the ableist conflation and disability paradox to understand why human flourishing may transcend the notion of ability. We end by describing a more humane approach to serious illness care communication.

There are two ways to tell the story of disability in the phenomenological tradition. On the first, disability has always been a theme, albeit often described using related terms such as impairment, illness, pathology, abnormality, or bodily variation. It has always been so in part because embodiment and its relationship to the social world regularly appear as a theme in the work of many central figures and across multiple debates in the tradition. On the second way of telling the story, phenomenological analysis of disability is relatively new, kicked off by the work of S. Kay Toombs in the early 1990s. Phenomenologists historically ignored disability as a fundamental aspect of being human because they either ignored disabled people’s testimony concerning their experiences or because they understood the description, reconstruction, and resulting knowledge of variations of norms, normality, and the normate, however defined, as mere stepping stones on the way to understanding the general (normal) structures of lived experience. Instead of picking one way of telling the story over the other, I will thread the needle between these ways of framing the complex relationship between the phenomenological tradition and inquiry into disability, for each harbors important insights.

An increasing number of scholars at the intersection of feminist philosophy, philosophy of disability, and critical disability studies have turned to Merleau-Ponty to develop phenomenologies of the non-normate body. These studies buck the historical trend of philosophers employing disability merely as an example of deficiency or harm, a litmus test for normative theories, or an umbrella term for inquiries into aphenotypical bodily variation. Given the near-ubiquitous privileging of ablebodiedness across the history of philosophy, I ask: is philosophical inquiry that begins with and from disability a form of what Merleau-Ponty honorifically terms “non-philosophy”? I first argue that the problematic treatment or omission of disability within philosophy is due primarily to its inheritance of what I call “the ableist conflation.” I then draw a cautionary tale about how ableist assumptions can easily undermine phenomenological inquiry. Though a critical, first-person centered analysis, I argue that Merleau-Ponty’s famous example of the “blind man’s cane,” in Phenomenology of Perception, runs awry by omitting the social dimensions of disabled experiences, misconstruing the nature of worldcreating disabilities, and operating via an able-bodied simulation that at times conflates object-annexation or -extension with incorporation. I hope to show that, following the excision of ableist assumptions, Merleau-Ponty’s work indeed functions as a fruitful model for non-normate phenomenology. If phenomenology is to become “non-philosophy,” as Merleau-Ponty once hoped, it must better heed the insights and correctives of non-normate phenomenology and philosophy, i.e., inquiry grounded in disabled or non-normate experience.De plus en plus de chercheurs à l’intersection de la philosophie féministe, de la philosophie du handicap [philosophy of disability] et des études critiques sur le handicap [critical disability studies] ont abordé Merleau-Ponty pour développer des phénoménologies du corps non normé. Ces études rompent avec la tendance historique des philosophes de saisir le handicap comme une déficience ou une blessure, une mise à l’épreuve des théories normatives ou un terme générique pour des enquêtes sur les variations corporelles aphénotypiques. Étant donné le privilège omniprésent du corps valide à travers l’histoire de la philosophie, je pose la question : une réflexion philosophique qui commence avec et à partir du handicap est-elle une forme de ce que Merleau-Ponty appelle « non-philosophie »?Je soutiens tout d’abord que le traitement problématique ou l’omission du handicap dans la philosophie sont dus en premier lieu à l’héritage de ce que j’appelle « coalition validiste » [ableist conflation], c’est-à-dire la coalition des formes de discrimination envers l’invalidité. J’esquisse ensuite une histoire prudente sur la manière dont les assomptions validistes peuvent facilement saper la recherche phénoménologique. Par une analyse critique centrée sur la première personne, je soutiens que l’exemple fameux de Merleau-Ponty de la canne de l’aveugle dans Phénoménologie de la perception omet à tort les dimensions sociales des expériences du handicap puisqu’il construit de manière faussée les formes de handicap qui créent des mondes et qu’il opère avec une simulation du corps valide qui parfois confond l’annexion ou l’extension d’objets avec l’incorporation. J’espère montrer que, en poursuivant l’exclusion des assomptions validistes, l’oeuvre de Merleau-Ponty fonctionne en effet comme un modèle fécond pour une phénoménologie non normée. Si la phénoménologie doit devenir « non-philosophie », comme l’espérait Merleau-Ponty, elle doit mieux tenir compte des intuitions et des corrections de la phénoménologie et de la philosophie non normée, c’est-à-dire la recherche basée sur l’expérience handicapée ou non normée.Diversi ricercatori all’incrocio tra filosofia femminista, filosofia della disabilità (philosophy of disability) e studi critici sulla disabilità (critical disability studies) si sono rivolti a Merleau-Ponty per sviluppare delle fenomenologie del corpo non-normato. Queste proposte si oppongono alla tendenza storica dei filosofi a impiegare la disabilità semplicemente come esempio di mancanza o di svantaggio, come cartina di tornasole per teorie normative oppure come un termine inclusivo che racchiuda ricerche mirate alla variazione afenotipica del corpo. Sulla base del privilegio accordato in modo pressoché assoluto al corpo normodotato nel corso della storia della filosofia, vorrei porre la seguente domanda: un’indagine filosofica che prenda le mosse dalla disabilità può essere letta come una forma di ciò che Merleau-Ponty chiama “non-filosofia”?In primo luogo, sosterrò che il trattamento problematico della disabilità o la sua omissione all’interno della filosofia sia dovuto primariamente al suo legame con ciò che chiamo “coalizione abilista” [ableist conflation], ovvero l’insieme delle forme di discriminazione della disabilità. Tratterò poi di come i presupposti “abilisti” possano facilmente inficiare la ricerca fenomenologica. Attraverso un’analisi critica e in prima persona, mostrerò come il famoso esempio di Merleau-Ponty del “bastone del cieco”, nella Fenomenologia della percezione, manchi di prendere in conto la dimensione sociale delle esperienze di disabilità, ricostruisca in modo inappropriato la natura delle disabilità generatrici di mondi, e dia adito ad una simulazione del corpo abile che a tratti confonde l’annessione dell’oggetto o l’estensione tramite questo con l’incorporazione. Spero di dimostrare che, una volta epurata dai suoi presupposti “abilisti”, l’opera di Merleau-Ponty possa valere come modello produttivo per una fenomenologia non-normata. Se la fenomenologia deve diventare “non-filosofia”, come augurava Merleau-Ponty, essa deve prestare maggiore attenzione alle intuizioni e ai correttivi della fenomenologia e della filosofia non-normate, ossia fondate sull’esperienza disabile o non-normata.

In the essay “Cézanne’s Doubt”, Merleau-Ponty explores the relationship between Paul Cézanne’s art and his embodiment. The doubt in question is ultimately about the meaning of Cézanne’s art in light of his disabilities. Should his disabilities or impairments shape how we interpret his art or should they instead be treated as incidental, as mere biographical data? Although Merleau-Ponty’s essay isn’t intended to be phenomenological, its line of questioning is as much about lived experience as it is about art, art history, and aesthetics. I here offer a reading of “Cézanne’s Doubt” as an exploration of one of the more fundamental issues for phenomenological methodology: the relationship between normality and the normate. I first defend this phenomenological and disability-centric or crip reading of the essay. I then argue that insofar as one takes oneself to be “normal” and insofar as doing so underwrites phenomenological inquiry, the problematic of the normate, not just that of normality, is central to phenomenology.

This chapter discusses the contributions that standpoint theory and intersectionality make as philosophical methods in bioethics. It opens by articulating foundational claims of standpoint theory and by examining how developing a critical consciousness of power relationships can transform perspectival knowledge into an epistemologically privileged standpoint that challenges the uncritical partiality of dominant perspectives. Next, the analysis of power relationships provided by feminist ethics is used to demonstrate how recognition of differing epistemological perspectives is transformed into feminist standpoint theory. It then examines how the method of intersectionality emerges, in part, from criticisms of feminism’s own shortsightedness and exclusionary practices. Then, a review of the methods of critical race theory describes its origins, basic tenets, and contribution in developing a critical consciousness relevant to bioethics. Finally, the chapter presents key insights from the field of disability studies, demonstrating how lived experiences of disability may provide a standpoint to inform medical and bioethical analysis, particularly in discussions of quality of life. Though perspectives informed by other features of social context are important for bioethical analysis—for example, social class, educational background, linguistic and cultural differences—this chapter focuses on gender, race, and disability to illuminate features of standpoint theory and intersectionality.

For over fifty years in fields spanning the humanities and social sciences, the relationship between disability and quality of life has been vigorously debated. As empirical work concerning this question grew, it became increasingly clear that whatever that relationship involves, it is not simple. In this chapter, I begin by laying out social scientific research on the relationship between disability and quality of life, arguing that it largely supports the claims of disability activism and scholarship concerning the possibilities of flourishing with disability. In section two, I turn to research in philosophy of disability and demonstrate that to understand the meaning of disability, we need to carefully distinguish between disability, well-being, and health status, including recognition of disabled people as a health disparity population. I conclude by discussing the most radical implication of research on disability and its relationship to flourishing: the need for embodied rights.

Background: While the solid organ transplant evaluation process is designed to function equitably, discriminatory practices remain, resulting in disparities in access for persons with disabilities. Physical function and frailty status are often-cited factors in establishing transplant, despite limited consensus on their assessment and impact. Objective: The purpose of this study was to describe how transplant healthcare professionals conceptualize the relationship between physical disability and transplant candidacy. Methods: A convenience sample of multidisciplinary transplant was solicited to respond to an electronic survey between February and March 2024. Results: Of the 126 professionals contacted, 43 participants responded, yielding a response rate of 34 %. The majority of participants (88 %) held contradictory views of physical disability as it relates to transplant candidacy (p = 0.049). Men were more likely to endorse awareness of bias when evaluating transplant candidates (p = 0.008). Professional discipline was significantly associated with perception of transplant process fairness, impact of bias, and interpretation of quality of life. Iterative thematic analysis revealed a propensity to conflate frailty with physical disability. Conclusions: Multidisciplinary transplant professionals rarely endorsed overtly ableist sentiments. However, responses highlighted inconsistent, unclear, and at times contradictory conceptions of physical function and physical disability, which may contribute to disparate access to solid organ transplant for individuals with physical disability.

Preimplantation genetic testing for polygenic disorders (PGT-P) has been commercially available since 2019. PGT-P makes use of polygenic risk scores for conditions which are multifactorial and are significantly influenced by environmental and lifestyle factors. If current predictions are accurate, then absolute risk reductions range from about 0.02% to 10.1%, meaning that between 10 and 5,000 in vitro fertilization patients would need to be tested with PGT-P to prevent one offspring from becoming affected in the future, depending on the condition and the number of embryos available. Survey and interview data reveal that patients and the public have largely favorable views regarding the use of PGT-P for disease prevention; however, clinicians and professional organizations have many reservations. The use of PGT-P raises multiple social and ethical concerns including the need for adequate counseling, the setting of realistic expectations, the application of distributive justice, the impact of environmental and social determinants of health, and the potential exacerbation of health inequities. Clinicians expressed significant concerns relating to the cost of PGT-P, the potential time-consuming counseling for reproductive endocrinologists and genetic counselors, the intentional creation of supernumerary embryos, and patients’ unrealistic expectations regarding “healthiest disease-free” embryos. Furthermore, current evidence lacks long-term outcome data and generalizability. Prior to offering PGT-P to patients, additional clinical validation studies are needed. Also, ethical and social considerations raised by PGT-P should be carefully delineated. Systemic practices to increase equitable access to unbiased genetic counseling and reproductive services would be desirable prior to the ethical implementation of PGT-P.

On January 30, 2020, the World Health Organization declared a Public Health Emergency of International Concern (PHEIC) over what would quickly become known as SARS-CoV- 2 or COVID- 19. This emergency status was officially ended in the United States in May 2023 amidst much dissent and debate. Although emergency conditions resulting from COVID- 19 will likely wax and wane over the coming years, there is good reason to think that the incidence of severe global pandemics will increase over the next century, as will declarations of emergency. The declaration of an emergency calls for urgent action, but it just as urgently demands careful reflection. Official “emergency” status licenses unparalleled executive intervention, completely reorganizing the lives of those who live under its decree. Such official recognition, however, is heavily dependent on the social context in and from which the emergency arises. Highlighting which circumstances rise to the level of an official emergency clarifies our reigning assumptions about what threshold of active harm—and in relation to which groups of people—demands immediate intervention.

White progressives in the United States are currently experiencing two profound reckonings that typically are assumed to be unrelated. On one hand, the Dobbs verdict overturned the assumption that the right to choose with respect to abortion is too socially entrenched, juridically settled, or politically sacred to be denied. On the other hand, climatological conditions for possibly having a comfortable existence are increasingly under threat in locales in which residents have come to expect to enjoy secure lives and livelihoods. This article highlights what Indigenous communities across the United States already know well. Namely, threats to reproductive freedom and climate crisis are neither new nor separable. Both phenomena have common colonial roots that continue to proliferate, each a result of the disruption and destruction of Indigenous kinship assemblages. Indeed, in aiming to remediate their current reckonings, white progressives routinely (if unthinkingly) support forms of settler-state violence that perpetuate reproductive and climate injustice in Indigenous communities. The authors appeal to white progressives, notably including white feminists, to embrace the proposition that their reckonings cannot be properly understood nor successfully addressed without prioritizing Indigenous futurity. They call for centering forms of Indigenous feminist praxis that facilitate robust Indigenous coalitions of anti-colonial resistance.

Disability Justice in Public Health Emergencies is the first book to highlight contributions from critical disability scholarship to the fields of public health ethics and disaster ethics. It takes up such contributions with the aim of charting a path forward for clinicians, bioethicists, public health experts, and anyone involved in emergency planning to better care for disabled people—and thereby for all people—in the future. Across 11 chapters, the contributors detail how existing public health emergency responses have failed and still fail to address the multi-faceted needs of disabled people. They analyze complications in the context of epidemic and pandemic disease and emphasize that vulnerabilities imposed upon disabled people track and foster patterns of racial and class domination. The central claim of the volume is that the ethical and political insights of disability theory and activism provide key resources for equitable disaster planning for all. The volume builds upon the existing efforts of disability communities to articulate emergency planning priorities and response measures that take into account the large body of qualitative and quantitative research on disabled people’s health, needs, and experiences. It is only by listening to disabled people’s voices that we will all fare better in future public health emergencies.

State violence against disabled people and Indigenous people as well as disabled Indigenous people has long been endemic in the US. Recent scholarship in philosophy of disability and disability studies rarely addresses the underlying issue that causes such state violence: settler-colonial conceptions of land. The aim of this article is to begin filling this gap in the literature. We detail settler colonial epistemologies and argue that the property relation underwrites operative concepts of accessibility dominant across disability theory. We show how such concepts of accessibility are Lockean and thereby defined terms of the project of settler colonialism. We instead offer an Indigenized account of access, which we term deep access, that does not rely on the notion of Lockean property and that provides a coalitional path for Indigenous futures and disability justice. On our account, decolonization is and must be a deep access measure.

In recent years, multiple authors have voiced discontent with the theoretical and practical neglect of the concept of ability. This includes, but is not limited to, philosophers of disability who have long assailed the implausible accounts of ability utilized by most social and political philosophers. Historically, most philosophers took it for granted that the meaning of ability will come easily, or is even a given, when higher-order questions are addressed. The aim of this chapter is to animate discussions about ability trouble, which is to say, to animate (i) concern over the lack of philosophical inquiry that takes the concept of ability seriously as a problem in its own right and to animate (ii) novel interest in and further research on the concept of ability—and, correlatively, disability. We first analyze a famous argument concerning moral status that exemplifies how treating the concept of ability as a mere matter of common sense can lead philosophical inquiry awry. We then turn to the role of the concept of ability in an account that does, at least prima facie, take the concept seriously: Sen and Nussbaum’s capabilities approach. While better than common-sense approaches, we draw a cautionary tale, suggesting that even there the concept is simplified in theoretically and practically problematic ways. We conclude with a number of open questions offered in the hope of inspiring future non-ideal research on the topic.

This piece lays out the framework for a special issue on the topic of "Fits and Misfits," published as volume 7, issue 1 of Puncta: A Journal of Critical Phenomenology. We discuss the relationship between the concept of misfitting, coined by Rosemarie Garland-Thomson, and debility, coined by Jasbir Puar, in relationship to scholarship on Merleau-Ponty. We then introduce each of the eight articles in the special issue: Rosemarie Garland-Thomson's "What Misfitting Makes," Susan Bredlau's "Conversational Accessibility: Healthcare, Community, and the Ethics of Everyday Encounters," Helen A. Fielding's "Being Touched by Wellness: Merleau-Ponty, Nancy, and the Intensive Care Unit," Ann Murphy's "The Spirited Interworld: Caregiving and the Liminal Phenomenology of Dementia," Rachel Elliott's "Sharing Time with Misfits: We-Experience across Bodily Difference," David Morris's "An-Archic Time: Melting the Clock as Hypernorm of the I Can -- and Philosophy," Rebecca Longtin's "Merleau-Ponty's Cézanne as Misfit Artist," and, finally, Laura McMahon's "The Politics of Vulnerability and the School for Peace: Insights from Butler, Merleau-Ponty, and Family Systems Theory."

Psychedelic experiences are often compared to “transformative experiences” due to their potential to change how people think and behave. This study empirically examines whether psychedelic experiences constitute transformative experiences. Given psychedelics’ prospective applications as treatments for mental health disorders, this study also explores neuroethical issues raised by the possibility of biomedically directed transformation—namely, consent and moral psychopharmacology. To achieve these aims, we used both inductive and deductive coding techniques to analyze transcripts from interviews with 26 participants in psychedelic retreats. Results indicate that psychedelic experiences can constitute transformative experiences. Twenty participants reported experiences or insights that were seemingly inaccessible or impossible to attain if not for the psychoactive effects of psychedelics. All participants besides one reported some change in identity, values, beliefs, desires, and behavior—changes in behavior being the most common. Participants also reported feeling capable deciding to use psychedelics in part due to information seeking prior to their retreats. Finally, several participants reported an enhanced capacity for enacting changes in their lives. Our results underscore both the importance of subjective embodiment to transformation and the role of transformative agency in shaping outcomes of the psychedelic experience. We examine our results relative to neuroethical issues and advocate for centering the person in psychedelic research and neuroethical inquiry about psychedelics to avoid pitfalls associated with psychedelics’ potential as moral psychopharmacological agents.

Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to be the defining feature of what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism.

The diagnostic category of borderline personality disorder (BPD) has come under increasing criticism in recent years. In this paper, we analyze the role and impact of epistemic injustice, specifically testimonial injustice, in relation to the diagnosis of BPD. We first offer a critical sociological and historical account, detailing and expanding a range of arguments that BPD is problematic nosologically. We then turn to explore the epistemic injustices that can result from a BPD diagnosis, showing how they can lead to experiences of testimonial injustice which impede patient engagement in meaning-making activities, thereby undermining standard therapeutic goals. We conclude by showing how our arguments bolster ongoing efforts to replace the diagnostic category of BPD with alternatives such as complex post-traumatic stress disorder.

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.

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making.

Given its subject matter, biological psychiatry is uniquely poised to lead STEM DEI initiatives related to disability. Drawing on literatures in science, philosophy, psychiatry, and disability studies, we outline how that leadership might be undertaken. We first review existing opportunities for the advancement of DEI in biological psychiatry around axes of gender and race. We then explore the expansion of biological psychiatry’s DEI efforts to disability, especially along the lines of representation and access, community accountability, first person testimony, and revised theoretical frameworks for pathology. We close with concrete recommendations for scholarship and practice going forward. By tackling head-on the challenge of disability inclusion, biological psychiatry has the opportunity to be a force of transformation in the biological sciences and beyond.

In this open peer commentary, we concur with the three target articles’ analysis and positions on abortion in the special issue on Roe v. Wade as the exercise of reproductive liberty essential for the bioethical commitment to patient autonomy and self-determination. Our proposed OPC augments that analysis by explicating more fully the concept crucial to Roe of fetal personhood. We explain that the development and use of predictive reproductive technologies over the fifty years since Roe has changed the literal image, and thereby the epistemological landscape, through which a prospective parent comes to know the fetus. The logic of Roe required a legal and ethical denial of fetal personhood to prioritize maternal autonomy over claims to fetal moral personhood. Our claim is that such a denial may be more complicated today. The fetal person genetic testing and reproductive imaging now presents to prospective parents has become an increasingly individualized, distinct medicalized picture of a developing person with which a parent can either identify or differentiate. In contrast, the fetal person of Roe was an abstract and vague figure stripped of most human particulars, a pregnancy rather than the specific individualized human entity reproductive technology now presents as a person to prospective parents. We discuss the implications of this shift and call for a more capacious analysis of reproductive ethics that works towards both reproductive and disability justice.