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)

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)