What Du Bois and I Know About Dignity of Risk.

This article uses multiple interwoven personal narratives to explicate the relationships among several concepts crucial to bioethics brought into focus by Robert Perske's 1972 article on "The Dignity of Risk," including dignity, risk, paradox, disability, autonomy, uncertainty, diagnosis, and prognosis. The use of personal narrative as a form of evidence and a knowledge-making method allows for the exploration of the meaning-making work of language and story and the introduction of humanities and social science concepts such as stigma management and dignity maintenance into Perske's concept of the dignity of risk. The personal narratives the article draws include Mark, a character in Perske's article; W. E. B. Du Bois; Frantz Fanon; and myself. Finally, the article calls for humility in medical science's predictive narratives for all patients, but particularly for people with disabilities.

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care.

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.

How We Got to CRISPR: The Dilemma of Being Human.

This article considers the existential and eugenic risks of gene editing with CRISPR-Cas9. It brings forward epistemological and phenomenological questions concerning what CRISPR technology suggests about the limits of being human. By illuminating the paradoxical relationship between our "then self" and "now self," it considers the fragility of our individual and collective future-making endeavors. To do this, the article offers an overview of the existential dilemmas facing modern subjects, a history of eugenics and the ideology of health, a meditation on the limits of human knowledge, and an explication of the cultural work of metaphor. It argues for the benefits of human variation for individuals and communities and concludes by calling for an attitude of humility and restraint to guide the development and implementation of humane technologies rather than genetic manipulation technologies that aim to control future outcomes through present actions.

What Do Unusual Faces Teach Us About the Ethics of Recognition?

With close attention to the film Wonder, this article examines how a narrative of community acceptance offers sustaining relationships for people with unusual facial appearance. This article argues that premodern responses of wonder can help reframe modern understandings of looking different.

Attitudes of people with inherited retinal conditions toward gene editing technology.

BACKGROUND: The views of people with genetic conditions are crucial to include in public dialogue around developing gene editing technologies. This qualitative study sought to characterize the attitudes of people with inherited retinal conditions (retinitis pigmentosa [RP] and Leber congenital amaurosis [LCA]) toward gene editing. METHODS: Individuals with RP (N = 9) and LCA (N = 8) participated in semi-structured qualitative interviews about their experience with and attitudes toward blindness, and their views about gene editing technology for somatic, germline, and enhancement applications. RESULTS: Participants saw potential benefits from gene editing in general, but views about its use for retinal conditions varied and were influenced by personal perspectives on blindness. Those who felt more negatively toward blindness, particularly those with later onset blindness, were more supportive of gene editing for retinal conditions. Concerns about both germline and somatic editing included: the importance of informed consent; impacts of gene editing on social attitudes and barriers affecting blind people; and worries about "eliminating" blindness or other traits. CONCLUSION: People with RP and LCA have diverse attitudes toward gene editing technology informed by their own lived experience with disability, and many have concerns about how the ways in which it is discussed and implemented might affect them.

Unexpected Creatures: Procreative Liberty and the Frankenstein Ballet.

One of the most recent and original adaptations of Mary Wollstonecraft (Godwin) Shelley's Frankenstein; or, The Modern Prometheus (1818) is the ballet version choreographed by Liam Scarlett and performed by the Royal Ballet in 2016 and the San Francisco Ballet in 2017 and 2018. What emerges from this translation is an economical, emotionally wrenching, and visually elegant drama of family tragedy from which we can draw a cautionary tale about contemporary bioethical dilemmas in family making that new and forthcoming biomedical technologies present. This performance of bodies interacting suggests the need for an ethics of acceptance and recognition as people navigate complex familial relationships involving procreative liberty, questions of moral personhood, and parental obligation. In the Frankenstein ballet, the narrative genre of dance-what I'll call "story in the flesh"-invites viewers to identify with the characters and enter into the complexity of interpersonal relations. The ballet becomes a compelling testimony about possible unintended outcomes set in motion by well-intended fallible humans like themselves.

Eugenic World Building and Disability: The Strange World of Kazuo Ishiguro's Never Let Me Go.

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.

The case for conserving disability.

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world.