In “Bioethics and the Moral Authority of Experience,” Ryan Nelson et al. (2022) argue that personal experience can simultaneously be an asset and a liability in the practice of bioethics and medici...

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs (...) of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. (shrink)

Trainees with disabilities in health-related professions are often subjected to structural ableism in medicine: the discriminatory manifestation of lowered expectations towards people with disabilities by medical professionals. In this case study, I reflect on my experiences as the first individual with significant disabilities to be offered a postdoctoral fellowship in clinical bioethics at the National Institutes of Health. I focus on the following question: What arrangements need to be in place in order for someone with my level of disability to (...) thrive as a clinical bioethicist? By telling my story, I show how the process of accommodating trainees with disabilities often requires creative problem-solving and a considerable amount of institutional resources. I also describe the team-based method that my mentors and I developed to enable me to complete rotations on the NIH’s bioethics consultation service. If more trainees with disabilities are to succeed in clinical bioethics trainee programs, the field will have to grapple with how to develop an infrastructure for providing disability related support across training programs. This article is the beginning of a dialogue about how to build such an infrastructure. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)

The 2012 film The Sessions tells the story of a man with polio who loses his virginity by undergoing Surrogate Partner Therapy (SPT). In light of ensuing controversy surrounding the legal and moral status of SPT, this article uses Norman Daniels’ framework of fair equality of opportunity in health to argue that SPT is a legitimate form of treatment for sexual dysfunctions and should be evaluated alongside other such treatments. I begin by showing how sexual dysfunctions constitute deviations in normal (...) species functioning. I then show that sexual capacities are a matter of fair equality of opportunity because they affect the ability to cultivate the sexual intimacy that is crucial for forming a family and often necessary for maintaining a healthy one. Recognizing that some might object to SPT as a form of prostitution, I proceed by showing how the treatment might avoid some of the objections raised against prostitution, and conclude by affirming that societies committed to fair equality of opportunity in health should work to make SPT legal and safe. (shrink)

Is it possible that justice requires giving people with disabilities like autism sufficient opportunities to pursue a flourishing life by promoting accessibility at theme parks and other places of public accommodation? I explore this question by analyzing the ethical issues at play in a series of disability lawsuits against Disney Parks and Resorts. Drawing on the work of Martha Nussbaum and Chiara Cordelli, I argue that Disney has an obligation of justice to provide these plaintiffs with their requested disability modification. (...) I further articulate how public accommodations other than Disney should accommodate disabled customers, sometimes with government assistance. (shrink)

The two target articles in this issue draw an important connection between disability bioethics and geriatric bioethics. Dominic JC Wilkinson makes a pragmatic case for using frailty as a fa...

Matteo Laspro et al. (2024) provide a thought-provoking review of the ethical issues surrounding Whole-Eye Transplantation (WET). In this commentary, we expand on three of the concerns they raise i...

In the author's dual identities of Disney fanatic and philosopher of disability, he was as delighted as a five‐year‐old on their first trip to the Magic Kingdom to see the progress that Disney had made in Finding Dory by depicting what philosophers call the social model of disability. In contrast to the social model of disability, people often see the medical model, in which disability is understood as an individual problem to be remedied through medical treatment or charity. Not to (...) get too far ahead of themselves, but Dopey from Snow White is a perfect illustration of a character with a disability portrayed in terms of the medical model. Keep pondering that while people consider a darker side to the Finding Dory disability paradise, one that reveals it is only a wonderful world for those who can speak. (shrink)

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and intellectual impairments, (...) for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

A number of recent legal cases in the United States have considered both disability‐based exceptions to Covid‐19‐related mask mandates and disability‐based claims to stronger masking rules in states restricting the abilities of local governments to enforce mask mandates. We argue that a proper legal and ethical analysis of such cases requires understanding the distinction between disability accommodations and disability modifications. Disability accommodations are individualized adjustments that enable qualified individuals to perform jobs or achieve access on terms comparable to those experienced (...) by others. Disability modifications are programmatic changes to structures or policies that increase accessibility. We contend that in the context of mask mandates, modifications rather than accommodations are ethically desirable because modification‐oriented policies promote disability access in a way that treats all individuals fairly, avoiding the risk of promoting misinformation and uncertainty about the health benefits of masking. (shrink)