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)

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)

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...

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...

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)

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...

Drawing on examples from art, media, fashion, history and memoir, the author tackles a basic human interaction which has remained curiously unexplored, the human stare. She defines staring, explores the biological and psychological factors that motivate it, and considers the targets and the effects of the stare.

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...

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...

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)

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)

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

In lieu of an abstract, here is a brief excerpt of the content:Rita Gross as Pioneer in the Study of Women and ReligionRosemary Radford RuetherRita Gross has been a pioneer in shaping both the theory and practice of women and religion and in Feminist theology. Her pathbreaking work in these fields has received insufficient recognition among both feminists and scholars of religion. This session at the 2010 AAR meeting devoted to her work is a small rectification of this neglect. Rita (...) has written more than 150 articles and written or edited around ten books. Three of these volumes—Beyond Androcentrism (1977), Feminism and Religion (1996), and A Garland of Feminist Reflections: Forty Years of Religion Explorations (2009)—span her writing career and exemplify her contributions to the field of women and religion.As Rita Gross makes clear, she went to the University of Chicago in the 1960s to explore the field of comparative religion, not to study women in religion explicitly. She was forced into this focus on women and has continued to return to this concern because of the resistance of the scholars in this field to paying attention to the ways in which half of humanity—women—participates in religion. Her concerns with women's roles in religion were shaped in response to the attitude of her mentors at the University of Chicago who insisted that what women did in religion was unimportant and was, in any case, covered by studying what men did in religion. One of these mentors ridiculed her by asking if she did not realize that the masculine is generic for humanness as a whole and so "includes the feminine." At most one might mention men's view of women. What women themselves think and do is irrelevant. At that time there were very few women in doctoral studies in religion at Chicago, and their teachers made clear that any concern with women as subjects of religion was a sure way to terminate their careers in the field.It was in responding to these kinds of messages from her teachers that Rita began to craft, in the late 1960s and 1970s, a fundamental shift in the methodology of religious studies. This would shape her decision to write her doctoral thesis on women in Australian Aboriginal religion, to edit a group of essays in her 1977 volume, Beyond Androcentrism, as well as doing pioneering work with Nancy Falk in the volume Unspoken Worlds, where they demonstrated the transformative understanding of religions that opens up when scholars focused on women's roles.This methodological shift, which Rita Gross has returned to again and again [End Page 75] through her writings, she called the movement from androcentrism to androgyny. Androcentrism as a bias in religious studies, or any other field, means quite simply the assumption that the male (usually the elite male) is the normative human being. To understand the "essence" of the human in any field it is sufficient to study what this elite male thinks and does. For Rita this is not only an injustice to women, but it also means turning a blind eye to at least half of what is actually going on in this or any other field. In other words, what is wrong about androcentrism as a way of doing study in religion is that it gives one a partial and distorted picture of reality. It is bad empiricism.The shift to androgyny means really looking equally at what women are doing as subjects of religion, not simply adding information about what men think of women. It is not that this information is totally absent or impossible to get. Often it is right there in the primary data, but is ignored by the scholars because of their androcentric bias. Bringing in women's activities and viewpoints as equal does not merely add a missing corner to the picture; it means transforming the whole picture. What men are thinking and doing is relativized and put in a larger context. For example, in understanding Australian Aboriginal religion one discovers not only that are women excluded from men's key rituals, but also that men are excluded from women's key rituals. The whole religion shifts from being understood as male dominant to being... (shrink)

What is a crip politics of bodymind? Drawing upon Rosemarie Garland-Thomson's theory of the misfit, I explain my understanding of crip and bodymind within a feminist materialist framework, and argue that careful investigation of a crip politics of bodymind must involve accounting for two key, but under-explored, disability studies concepts: desire and pain. I trace the turn toward desire that has characterized DS theory for the last decade, and argue that while acknowledging disability desire, we must also (...) attend to the aspects of disability, including pain, that are sometimes bad. Although I don't argue that pain is always and only bad, I call for recognition of the ways pain complicates disability desire, as well as the possibilities it opens for specifically located, collective forms of care. (shrink)

An increasing number of scholars at the intersection of feminist philosophy and critical disability studies have turned to Merleau-Ponty to develop phenomenologies of disability or of what, following Rosemarie Garland-Thomson, I call "non-normate" embodiment. These studies buck the historical trend of philosophers employing disability as an example of deficiency or harm, a mere litmus test for normative theories, or an umbrella term for aphenotypical bodily variation. While a Merleau-Pontian-inspired phenomenology is a promising starting point for thinking about (...) embodied experiences of all sorts, I here draw a cautionary tale about how ableist assumptions can easily undermine accounts of non-normate experience. I first argue that the omission or misguided treatment of disability within the history of philosophy in general and the phenomenological tradition in particular is due to the inheritance of what I call “the ableist conflation” of disability with pain, suffering, and disadvantage. I then show that Merleau-Ponty’s famous reading of the blind man’s cane is problematic insofar as it omits the social dimensions of disabled experiences, misconstrues the radicality of blindness as a world-creating disability, and operates via an able-bodied simulation that confuses object annexation or extension with incorporation. In closing, I contend that if phenomenology is to overcome the errors of traditional philosophy, as Merleau-Ponty once hoped, it must heed the insights of “crip” or non-normate phenomenology, which takes the lived experience of disability as its point of departure. [French translation forthcoming in Pour une phénoménologie critique, ed. Donald A. Landes, Quebec City, Les Presses de l'Université Laval/Paris, J.Vrin]. (shrink)

Distinguishing between normal and non-normal cases of perception and motricity is a key part of Merleau-Ponty’s methodology in Phenomenology of Perception. Many feminist philosophers and disability scholars have criticized this use of the normal/nonnormal binary and the presumptions behind it. Others have embraced his methodology and noted its consonance with contemporary feminist, disability, and philosophy of race scholarship. In this paper, I present my own interpretation of what Merleau-Ponty means by “normal”. I draw on Rosemarie Garland-Thomson’s concept (...) of “fit” and also draw attention to the broader existential-phenomenological framework within which Merleau-Ponty is working. This re-framing of the term does two things. First, it provides a clear picture of the hidden methodology at work in Phenomenology of Perception. Second, it offers the possibility of grounding the concept of “fit” in an existential-phenomenological conception of the self. (shrink)

Pierre Bourdieu was one of the most important thinkers of the twentieth century. He argued for, and practiced, rigorous and reflexive scholarship, interrogating the inequities and injustices of modern societies. Through a lifetime's explication of the ways in which schooling both produces and reproduces the status quo, Bourdieu offered a powerful critique and method of analysis of the history of schooling, and of contemporary educational polices and trends. Though frequently used in educational research, Bourdieu's work has had much less take (...) up in Educational Leadership, Management and Administration. Educational Leadership and Pierre Bourdieuargues that ELMA scholars have much to gain by engaging more thoroughly with his work. The book explains each of the key terms in Bourdieu's thinking tool kit, showing how the tripartite concepts of field, habitus and capitals offer a way through which to understand the interaction of structure and agency, and the limits on the freedom of an individual - in this case an educational leader - to act. Educational Leadership and Pierre Bourdieuoffers an analysis of dominant trends in ELMA research, examining the kinds of questions asked, projects undertaken and methods used. It provides alternative questions and methods based on a Bourdieusian approach, further readings and a range of exemplars of the application of these tools. The book will be of interest to those whose primary focus is the utility of Bourdieu's social theory. (shrink)

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work.This work is in the public domain in (...) the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work.As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

Fischer suggests that the endless life of an immortal would be just as desirable as the very long but finite life of a long‐lived mortal. Fischer acknowledges that this is “one of the most difficult and challenging issues surrounding immortality.” This chapter answers the following: Why do we think, conversely, that being able to die makes a crucial difference? Why would an individual existence that could never come to an end necessarily be bad?. An immortal being could conceivably cycle through (...) an endless succession of such selves, each organized into a coherent and meaningful identity by the new life‐project born out of the collapse of the old one. The author argues, however, that the endless life of an immortal would necessarily fail to qualify as life worth living. So, were we ever to face that choice with which we began, we think living with death remains preferable to the alternative. (shrink)

"Künstlerische Selbstverletzung - seit den 1960er Jahren international fester Bestandteil der Performance Art - polarisiert, verstört und wirft vor allem Fragen nach Handlungsmotivationen auf. Rosemarie Brucher deutet dieses radikale Phänomen als Bewältigungsversuch bedrohter Autonomie und damit in erster Linie als Ermächtigungsstrategie. In dieser Ambivalenz aus Subjektermächtigung und Naturunterwerfung lässt sich künstlerische Selbstverletzung vor dem Hintergrund von Immanuel Kants Ästhetik des Erhabenen lesen, was die Autorin exemplarisch an VALIE EXPORT und Stelarc darlegt. Eine solche Bezugsetzung eröffnet nicht nur einen innovativen (...) Zugang zu dieser Kunstform, sondern wirft zugleich auch ein neues Licht auf Kants Erhabenheitskonzeption"--Back cover. (shrink)

This paper examines what can be learnt from analysing attempts to give lay people more involvement in the administration of state schools. Although devolving more responsibility to schools and lay governors has been an important feature of school reform in several countries, it is not immediately apparent if this shift is the product of globally similar social and political forces or nationally specific cultural, ideological and economic factors. In considering this issue, the paper describes recent changes in school governance in (...) England, New Zealand, USA, Scotland and Catalunya, Spain. It is argued that some of these changes can best be characterised as attempts to increase the democratic participation of citizens in the running of schools. Other changes, however, seem rather to represent on attempt to bring the culture of business to schools and reduce the power of professional educators over education. (shrink)

What do a short car trip, a pandemic, the wood-wide fungal web, a challenging learning experience, a storm, transport logistics, and the language(s) we speak have in common? All of them are systems, or multiple sets of systems within systems. What happens in any set of circumstances will depend on a mix of initial conditions, complexity dynamics, and the odd wild card (e.g., a chance event). While it is possible to model and predict what might or perhaps should happen, it (...) is impossible to be certain. "It depends" thinking needs to be applied. Future-focused literature identifies complex systems thinking as an essential capability for citizenship, and this book sets out to show teachers how they might foster it-for themselves as well as for their students. There are implications for pedagogy, curriculum, and assessment. Multiple examples show what changes might look like, for students of different ages, and in different subject contexts. This is a book of several layers: It is both practical and philosophical. There is explicit discussion of parallels between complexity science and indigenous knowledge systems (specifically mātauranga Māori in the New Zealand context). The many examples are designed to appeal to general readers with an interest in the complex challenges facing contemporary societies, as well as to teachers at all levels of the education system. (shrink)