Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the (...) logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (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)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

One prominent argument against the use of preimplantation genetic diagnosis to select a deaf embryo with the aim of creating a deaf child is that it violates the child’s right to an open future. This paper challenges the open future argument against deaf embryo selection, criticizing its major premise that deafness limits a child’s opportunity range in ways that compromise their future autonomy. I argue that this premise is not justified and is supported by negative presumptions about deaf embodiments that (...) are suspect and in need of further argumentation. First, available interpretations of the open future concept fail to justify the devaluation of deaf traits as inherently autonomy-diminishing. Second, arguing against deaf embryo selection requires demonstrating that a deaf trait generally constrains opportunity ranges independent of social context. But such analyses neglect important social and relational components of autonomy. For these reasons, merely appealing to the child’s right to an open future does not sufficiently support the conclusion that deaf embryo selection is wrong. (shrink)

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess Curtis and Clare Cunningham, (...) an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)

I develop an interpretation of Maurice Merleau-Ponty's concept of motor intentionality, one that emerges out of a reading of his presentation of a now classic case study in neuropathology—patient Johann Schneider—in Phenomenology of Perception. I begin with Merleau-Ponty's prescriptions for how we should use the pathological as a guide to the normal, a method I call triangulation. I then turn to his presentation of Schneider's unusual case. I argue that we should treat all of Schneider's behaviors as pathological, not only (...) his abstract movements, as is commonly acknowledged in the secondary literature, but also crucially his concrete movements. Using these facts of Schneider's illness, I reconstruct a ‘fundamental function’ of consciousness, as Merleau-Ponty called it, in which there are two kinds of bodily agency: the power of the body to be solicited by a situation and the power of the body to project a situation. I propose that these powers became dissociated in Schneider's case, as evidenced by his abstract and concrete movements, while in the normal case, these powers comprise a dynamic unity, enacted as motor intentionality. I also discuss how my interpretation complements Merleau-Ponty's assertion that motor intentions exist between mind and matter. (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 the fall of 2018 Jiankui He shocked the international community with the following announcement: two female babies, “Lulu” and “Nana,” whose germlines had been modified by the cutting edge, yet profoundly unsafe CRISPR-Cas9 technology had been born. This event galvanized policy makers and scientists to advocate for more explicit and firm regulation of human germline gene editing. Recent policy proposals attempt to integrate safety considerations and public input to identify specific types of diseases that may be safe targets for (...) human GGE. This paper argues these policy proposals are inadequate in different ways. While Sarkar intends to incorporate input from the disability community for the purpose of deciding the value of human GGE, I argue that his strategy for doing so is inadequate. I’ll argue that an iterative, deliberative process is a more appropriate framework for allowing the disability community to inform policy on human GGE. Further policy proposals have been framed in terms of monogenetic or single-gene diseases. I argue that this way of conceptualizing disease is not what matters for deciding which disorders are viable candidates for human GGE. Instead, what matters is that the disease in question must have genes that have a high degree of causal control with respect to the disease and alternative nucleic acid sequences variants that are likely to produce traits deemed desirable must be identified. Previous policy proposals leave unspecified. What conditions must be met for satisfying condition should not be left to individual scientists to decide for themselves. The present proposal offers some guidance on this issue. (shrink)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...) implications for just and equitable healthcare delivery. (shrink)

In this paper, I argue that the concept of normality in medical research and clinical practice is inextricable from the concept of ambiguity. I make this argument in the context of Edmund Pellegrino's call for a renewed reflection on medicine’s basic concepts and by drawing on work in critical disability studies concerning Deafness and body integrity identity disorder. If medical practitioners and philosophers of medicine wish to improve their understanding of the meaning of medicine as well as its concrete practice, (...) I contend that they should take seriously the import and centrality of ambiguity for biomedicine. (shrink)

In this article, I illustrate ways in which the concepts of the norm and normativity, as well as discourses about normality and the good life, are implicated in relations of power that inform individuals’ values. By analyzing the separation of conjoined twins as a paradigmatic example of practices of overmedicalization, I consider the implications of taking the “goodness” of normality for granted. I argue that overmedicalization procedures establish an interpretative framework that does not leave room for recognizing the contingency of (...) societal suppositions about normality and the good life. It is this kind of ethical reflection (or lack thereof) that I problematize as being symptomatic of individuals’ “normalized” ethical reflection. (shrink)

New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children “at risk” are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children’s lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to (...) study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness. (shrink)

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

This paper proposes a theory of text on-screen as “unvoiceover.” It addresses both the case for captioning as social good and the affordances (aesthetic, affective) of writing in or over the moving image. Advancing an argument informed by perspectives from d/deaf Studies, Critical Disability Studies and Digital Interface Studies, and applying modes of analysis from literary criticism alongside those proper to the study of moving image and sound, it examines the idiosyncrasies of text-in-motion as non-sonorous, fugitive counterpart to the traditional, (...) troublesome “voiceover.” To develop a poetics of the unsounding voice on-screen, the paper focalizes its argument through multimedia artist Liza Sylvestre’s Captioned series: a body of moving image work that is itself, paradoxically, uncaptioned. Framing Sylvestre’s lyrical “unvoiceover” as a reimagining of the lost roles of film explainers and literary intertitles, I argue that the artist’s takeover of the caption track intervenes critically in contemporary debates about the ethics of audio-visual translation, situated description and access as public ethos rather than private concern. Posing the artist’s personal-and-political writing as suggestive of a lower-case analogue to Deaf Gain, I show how Sylvestre’s “unvoiceover” educates its “receivers” in the purpose and functioning of captions. By reading Sylvestre’s writing on-screen more closely than its fugitive form seems to invite, I show how the unvoiceover encultures its own demands on its readers and elicits its own habits of reading. By scrutinizing how Sylvestre’s series makes the case for captioning, this paper makes the case for a new appraisal of the aesthetic, affective and political affordances of the unvoiceover as writing on the run. (shrink)

This article uses elements of autoethnography to theorize an in/formal support relationship between a friend with a physical disability, who uses attendant services, and me. Through thinking about our particular “frien-tendant” relationship, I find the common scholarly orientations toward “care” are inadequate. Starting from the conversations between feminist and disability perspectives on care, I build on previous work to further develop the theoretical framework of accessible care. Accessible care takes a critical, engaged approach that moves beyond understanding “accessibility” as merely (...) concrete solutions to create more inclusive forms of care. Care, in this context, is positioned as an unstable tension among competing definitions, including that it is a complex form of oppression. Accessible care draws on feminist disability perspectives and the feminist political ethic of care to build bridges in four areas: from daily experiences of disability and support to theoretical discussions; across feminist care research and disability perspectives; across divisions and anxieties within disability communities; and from the local to transnational applications. These bridges do not aim to resolve debates but allow us to travel back and forth between differing perspectives and demonstrate the tenuous possibility of accessible practices and concepts of care. (shrink)

My aim in this article is to argue that Philippa Foot fails to provide a convincing basis for moral evaluation in her bookNatural Goodness.Foot's proposal fails because her conception of natural goodness and defect in human beings either sanctions prescriptive claims that are clearly objectionable or else it inadvertently begs the question of what constitutes a good human life by tacitly appealing to an independent ethical standpoint to sanitize the theory's normative implications. Foot's appeal to natural facts about human goodness (...) is in this way singled out as an Achilles' heel that undermines her attempt to establish an independent framework for virtue ethics. This problem might seem to be one that is uniquely applicable to the bold naturalism of Foot's methodology; however, I claim that the problem is indicative of a more general problem for all contemporary articulations of virtue ethics. (shrink)

In 1960, a relatively new ‘syndrome’ began appearing with growing frequency in psychiatric hospitals and in doctors’ offices. Eventually termed ‘delicate self-cutting’, this new model for typical self-mutilative behavior was developed in conjunction with a description of the ‘typical’ self-mutilator: young (adolescent to just post-adolescent), female, and almost always attractive. This article contends that, despite recent efforts to change the nature of research on self-mutilation, the myth of a typical mutilator, developed from a particular historical bias, continues to work in (...) popular and medical discourses on the subject. I will begin with a detailed discussion of the medical discourse in an effort to ask how the myth was made. Noting that the female body, here, is singled out as pathological at a time when, specifically in the USA, the emergent Women’s Movement was beginning to contest certain gender lines, I would like to examine how the medical discourse and material bodies interrelate and interact with each other and with the cultural narratives around them. Finally, I end with examples from the 1999 film Girl, Interrupted, as well as other recent popular and medical accounts, to illustrate not only the perpetuation of the myth of the ‘typical’ self-mutilator but also the inability or refusal to recognize the biased nature of the medical discourse in the instance on self-mutilation. (shrink)

During the first half of the twentieth century, the mining industry in Britain was subject to recurrent disputes about the risk to miners’ lungs from coal dust, moderated by governmental, industrial, medical and mining bodies. In this environment, precise measurements offered a way to present uncontested objective knowledge. By accessing primary source material from the National Archives, the South Wales Miners Library and the University of Bristol's Special Collections, I demonstrate the importance that the British Medical Research Council (MRC) attached (...) to standardized instrumental measures as proof of objectivity, and explore the conflict between objective and subjective measures of health. Examination of the MRC's use of spirometry in their investigation of pneumoconiosis (miner's lung) from 1936 to 1945 will shed light on this conflict and illuminate the politics inherent in attempts to quantify disability and categorize standards of health. (shrink)

Speaking as an anthropologist, I comment on three striking features of Jaswal & Akhtar's argument. I suggest that the boldness of their intervention lies in its modesty. In challenging a parsimonious explanation for autistic behavior, they invite a conversation including scholars from other disciplines, as well as autistic people themselves.

The author explores disability in K-12 schools where attitudes, beliefs, and practices shape the school culture and influence enduring perceptions about disability among school professionals, students, and their families. Drawing on recent conversations among moral philosophers who view disability as a central feature of human life that has yet to enrich understanding of ourselves and others, the author encourages the practice of reform grounded in a process that begins with a “suspicion of the self” and a willingness to risk the (...) personal. (shrink)

BackgroundNormality is both a descriptive and a normative concept. Undoubtedly, the normal often operates normatively as an exclusionary tool of cultural authority. While it has prominently found its way into the field of medicine, it remains rather unclear in what sense it is used. Thus, our study sought to elucidate people’s understanding of normality in medicine and to identify concepts that are linked to it.MethodsUsing convenient sampling, we carried out a cross-sectional survey. Since the survey was advertised through social media, (...) we employed an online survey. We performed descriptive and inferential analyses. Predictors were chosen in a theory-driven manner.ResultsIn total, 323 persons from 21 countries completed the survey. Analysis revealed that the overall acceptance of normality in medicine was associated with notions of injustice, authority, discrimination, and with having a medical profession. More precisely, for the field of mental health, injustice insensitivity, genderism and transphobia, and authority were positively associated with a person’s acceptance of normality; and, for the field of physical health, injustice insensitivity and having a medical profession were positively associated with a person’s acceptance of normality. Finally, participants’ acceptance of the use of normality in the area of mental health was lower than in the area of physical health.ConclusionsWhat is considered normal has implications for clinical practice, both at an individual and at a policy-level. Acknowledging its normalistic condition, the discipline of medicine has to confront itself with its own contribution to the augmentation of social inequalities through the excessive reliance on the concept of normality. Research that centers the lived experiences of those who are being systematically marginalized because they are deemed abnormal is needed. By empirically elucidating the conceptual relationships between normality in medicine and other variables, we provide points of leverage to deprive normality of its normative power. For medicine, this is needed to first do no harm. (shrink)

In this paper I explicate what it means to see phenomenologically for an able-bodied researcher in the field of disability, and how this seeing yields a non-reductionistic understanding of the phenomenon of disability. My aim is to show how in this context, I, as a human and social scientist can use phenomenological methodology for both collecting and interpreting data. Though phenomenological philosophy can provide the basis of social scientific epistemology, it does not lend itself easily to a single specific or (...) programmatic social scientific methodology. I offer possible ways of using phenomenological theory, methodology and techniques in order to understand the experience of a person with physical disability learning to use a wheelchair. I use data from a clinical encounter between a physical therapist (PT) and an adult with Spinal Cord Injury (SCI) in an inpatient rehabilitation hospital in Midwestern United States in order to flesh out phenomenological seeing. I conclude with implications for qualitative researchers who use phenomenological methods to inform their work. (shrink)

The central issues raised in much of feminist literary theory's early scholarship remain prescient: how does narrative engage with the social‐historical? In what ways does it codify existing structures? How does it resist them? Whose stories are not being told, or read? In this article I use Doris Lessing's novel The Fifth Child (1988) as a text with which to begin to address the above questions by reading with attention to the mother story but also the ‘other’ stories operating both (...) within and outside of the novel; in particular I am concerned with the convergence of maternity, disability and narrative. The novel's co-implication of sexual difference and corporeal difference reveals the ways in which the mother's story is both made possible and authorized by the disabled body of her child, and by his inability to tell his own story. Yet, if The Fifth Child is a horror story that uses the disabled child's body as its ground, it is also about the horror of maternity, in its conception and attendant choices. In this fictional story as well as in the social‐historical narrative circulating at the time of its publication in the late 1980s, both child and mother are indicted in their otherness and it is ultimately impossible to separate one from the other. (shrink)

The term “normal” is culturally ubiquitous and conceptually vague. Interestingly, it appears to be a descriptive-normative-hybrid which, unnoticedly, bridges the gap between the descriptive and the normative. People’s beliefs about normality are descriptive and prescriptive and depend on both an average and an ideal. Besides, the term has generally garnered popularity in medicine. However, if medicine heavily relies on the normal, then it should point out how it relates to the concept of health or to statistics, and what, after all, (...) normal means. Most importantly, the normativity of the normal needs to be addressed. Since the apparently neutral label “normal” can exclude, stigmatize, and marginalize people who are defined in contrast to it as abnormal, health professionals should think twice before using the term with patients. The present critical perspective advocates against using the term “normal,” as long as no understanding of a person’s individual normality has been attained. It advocates for the right to autonomously determine one’s own normality. For health professionals I do not see worthwhile benefits of subscribing to the concept of “normality” and imposing it on their patients. But I do see many risks. (shrink)

I argue that, if it is thought desirable to avoid the collapse of disability into generic social disadvantage, it is necessary to draw a distinction between impairment (a bodily configuration) and disability (the way in which the environment prevents someone with an impairment from undertaking certain kinds of activities), as in social models of disability. I show how to draw such a distinction by utilizing a distinction between intrinsic and extrinsic properties. I argue further that, using this distinction, it is (...) possible to define ‘impairment’ in ways that do not appeal to notions of the normal, and to define ‘disability’ in terms of ‘impairment.’. (shrink)

Disability theory privileges masculinist notions of presence, visibility, material “reality,” and identity as “given.” One effect of this has been the erasure of “sensibility,” which, it is argued, inscribes, materializes, and performs the critique of binary thought. Therefore, sensibility must be re-articulated in order to escape the “necessary error” of identity implicit in accounts of cultural diversity, and to dialogue across difference in ways that dislocate disability from its position of disvalue in feminist thought.

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...

This article focuses on the recent production of sleep as a matter of concern in American society. In it, I draw primarily on fieldwork with sleep researchers and clinicians to understand the means by which ideas about sleep are produced and disseminated, and discuss the rise of sleep medicine since the late 1970s and the ways sleep disabilities have been constructed and mobilized in contemporary allopathic research and practice. The article provides a description of modern sleep medicine practices, and analyses (...) clinical encounters between researchers, clinicians and patients, particularly the ways patient cases are produced and interpreted. I follow these ethnographic observations with textual analysis of the National Sleep Foundation's campaigns to promote sleep awareness, and offer the theoretical concepts of medical abstraction and insistence as a means to understand the production of sleep as a matter of concern, and how it might be made to adhere in particular patients' lives and the practices of clinicians. (shrink)

New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children “at risk” are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children’s lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to (...) study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness. (shrink)