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. (shrink)

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. (shrink)

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. (shrink)

What has come to be called critical disability studies is an emergent field of academic research, teaching, theory building, public scholarship, and something I'll call "educational advocacy." The critical part of critical disability studies suggests its alignment with areas of intellectual inquiry, sometimes awkwardly called identity studies, rooted in the political and social transformations of the mid-20th century brought forward by the broad civil and human rights movement. These movements pressed both the law and the social order toward an expansion (...) of rights for people previously marginalized or excluded from full participation in exercising the obligations and benefits of equal citizenship. The ideas of... (shrink)

In the first book of its kind, Garland-Thomson defines staring, explores the factors that motivate it, and considers the targets and the effects of the stare.

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... (shrink)

Berger and Miller assert that race and ethnicity based cultural competence is a failure because medicine grounds its conceptualization of cultural competence on a “flawed” understanding of r...

Short overview of the From Small Beginnings Project and its relevance for resisting eugenics in contemporary society.

An attempt to reduce disability discrimination can do more harm than the ostensible discrimination itself. Such is the case with Shavelson et al.’s (2023) argument for equal access to medical aid i...

Dive et al. argue to limit the scope, scale, and quantity of results in genomic screening programs at the population level. Their analysis offers two interrelated reasons for this recommendation: f...

Commentary on Rob Sparrow’s (2022) target article, “Human Germline Genome Editing: On the Nature of Our Reasons to Genome Edit,” should consider the collection of articles Sparrow has authored on g...

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. (shrink)

Volume 19, Issue 7, July 2019, Page 24-26.

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. (shrink)

I have at least four close friends who seem to be ideal qualified recipients of WET. My friends have a variety of eyes: some prosthetic, some wandering, some misaligned, some absent, some shrouded...

The AJOB Neuroscience insight article, “A Cross-Cultural Neuroethics View on the Language of Disability,” gathers social science empirical data detailing the words that structure the human variatio...

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. (shrink)