Rosemarie Thomson

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.

This chapter proposes that recognizing the lived experience of disability as an informing principle of full moral personhood is essential to understanding what is required for human flourishing, which is a concept that ultimately supports a wide spectrum of human embodied existence. An attitude of humility and welcome toward the human experience of disability can serve to guide practice, policy, world building, and technology making in the world, all of which will enable individuals to flourish in their full distinctiveness rather than within narrowly conceived definitions of physical and genetic traits thought to be advantageous. A bioethics that intentionally and ethically shapes society, instead of shaping bodies, can urge us to create a shared world inhabitable by the widest range of human users, thus also a world that promotes the cultural, political, institutional, and material climate in which people with disabilities can most effectively flourish.

I came to wonder last summer on a research visit to the Ringling Brothers Museum in Sarasota, Florida. Scattered with garish posters and peculiar objects, the museum’s circus archive was a cabinet of curiosities documenting a lost world of the extraordinary. Circuses, sideshows, and early museums were entertainment venues that offered good jobs to people with disabilities at a time well before disability rights or accessible workplaces integrated people with disabilities into public life. At the Circus Museum, I came to understand more fully that many of the people on the freakshow’s broadsides are my ancestors, people with rare congenital disabilities that gave them uncommon appearances and occasioned for them... Read More.

Weaving together personal experience, disability studies scholarship, and art criticism, this paper explores the relationship between embodied experience of the world and the demands placed on us to conform to it. Misfitting forces us to recognize the fundamental distinction between flesh and world, and with it both the limits and possibilities of the human capacity to act and to be. The fundamental misfit all humans share is that we emerge from the sheltering womb into a material world that is indifferent to our individual existence. That is to say, mortality is the fundamental misfit of the human condition. It is in this sense that flesh emplaced in world is always a relationship of misfitting. The existential and social repair that misfitting calls for is attentive care and love, an attitude of welcome and openness to all body-minds, whether expected or unexpected, whether fit or misfit.

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.

This chapter considers the hypothetical healthy newborn as a representation, an aspirational abstract ideal rendered through a variety of discourses. Exploring the cultural work of the hypothetical healthy newborn figure can help clarify the moral conflict at the heart of a pregnant woman's dual obligation to her own best interests and the best interest of her future child, and can help point us toward an alternative moral conception of full personhood as vitality, rather than conformity to the ideal of the healthy newborn.

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.

This article offers the critical concept misfit in an effort to further think through the lived identity and experience of disability as it is situated in place and time. The idea of a misfit and the situation of misfitting that I offer here elaborate a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with the environment in its broadest sense, to include both its spatial and temporal aspects. The interrelated dynamics of fitting and misfitting constitute a particular aspect of world-making involved in material-discursive becoming. The essay makes three arguments: the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body; the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence; the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects

we always get to this difficult conversation one way or another when I'm talking to friends who have kids with disabilities. It goes like this: "If there had been a test for autism when my wife was pregnant with our son," my close friend tells me, "she would definitely have had an abortion." He tells me this with candor because he knows I know that this does not mean that he regrets having the son, grown up now, that they do have. Parents with disabled children are usually rightfully wary about engaging in such conversations, but perhaps because I have a significant congenital genetic disability myself, we talk together about this with intimacy and mutual understanding. With his reflection about what we now...

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.