The history of the field of intersex bodies/bodies with variations of sex development reflects the ongoing tension between sociomedical attempts to control uncertainty and reduce the duration of corporeal uncertainty by means of early diagnosis and treatment, and the embodied subjects who resist or challenge these attempts, which ultimately increase uncertainty. Based on various qualitative studies in the field of intersex, this article describes three temporal sociomedical approaches that have evolved over the last decade and aims to address the uncertainty (...) surrounding intersex/VSD bodies. These approaches are the corrective-concealing approach, which includes early surgeries and hormone therapies intended to “correct” intersex conditions and the deliberate concealment of the ambiguity and uncertainty associated with intersex conditions; the preventive approach, which involves early genetic diagnostic methods aimed at regulating or preventing the recurrence of hereditary conditions under the umbrella of VSD; and the wait-and-see approach, which perceives intersex bodies as natural variations and encourages parents to take time, wait, and give their children the right to bodily autonomy. A comparison of these approaches from biopolitical, phenomenological, and pragmatic perspectives reveals that time is an essential social agent in addressing and controlling uncertainty, a gatekeeper of social norms and social and physical orders, and, on the other hand, a sociopolitical agent that enables creative social change. (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)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

This paper examines five groups of women that were instrumental in the emergence of the category of “feeblemindedness” in the United States. It analyzes the dynamics of oppression and power relations in the following five groups of women: “feebleminded” women, institutional caregivers, mothers, researchers, and reformists. Ultimately, I argue that a feminist analysis of the history of mental retardation is necessary to serve as a guide for future feminist work on cognitive disability.

Given the resurgence of scientific studies on the etiology of homosexuality in the wake of the AIDS epidemic, this article considers the effects these studies had on contemporaneous queer filmmakers. By using the subject of criminality as a way to talk about homosexual causality, queer films of the 1990s illustrate that contemporary scientific studies on homosexuality were historically and politically situated in relation to cultural anxieties about other forms of deviance. This article focuses on films that dissect the hetero-normative tendency (...) to amalgamate forms of deviance in order to distinguish between the diseased and the healthy. Such products of New Queer Cinema highlight this amalgamation of criminality and homosexuality in order to challenge demands by the LGBT community of the 1980s and 1990s for “more positive images” in film. This article argues that queer filmmakers have manipulated the image of the queer criminal to usurp the medical tendency to biologize and pathologize the notion of queer transgression. In such a way, queer films that enthusiastically dramatize the queer outlaw perpetuate myths about homosexuality in order to dissect and discredit them. (shrink)

Seen as contributing to human enhancement, implanted technologies have recently been receiving a lot of attention. However, reflections on these technologies have taken the shape of rather speculative ethical judgments on “hyped” technological devices. On the other hand, while science and technology studies and philosophy of technology have a long tradition of analyzing how technological artifacts and tools transform and configure our lives, they tend to focus on use configurations rather than the intimate relations brought about by implanted technologies. Even (...) the cyborg has lost some of its hermeneutic power as it has been detached from its material grounds, becoming a discursive entity. In this article, I reclaim the importance of materiality and explore how people live with spinal cord stimulation, which is a type of neuromodulation technology. Implanted in bodies and seemingly out of sight, this technology does not cease to matter. Embodiment and incorporation are crucial for people to live well with SCS. Embodying the neuromodulation technology entails groping processes in which gestures are central and an increased intimacy with one’s bodily materiality. Incorporating it is highly relational and entangled with the bodies of loved and distant ones, humans and nonhumans. (shrink)

This brief monograph was written in an attempt to discover the general situation of Disability Studies, given that this appears to have become a growth area in academia with various typically illiberal aspects. The findings bear out the initial impression. There is a style of argument, even propaganda (for there is usually little genuine engagement with opposing liberal views), that can be seen in many other areas of academia. It amounts to a relatively new ‘progressive’ industry with various fashionable keywords, (...) phrases and ideologies—often not obviously related to disabilities in any serious way—indicating the nature of the beast: ‘progressive’, ‘radical’, ‘oppression’, ‘bourgeois’, ‘empowerment’, ‘rights’, ‘equal opportunities’, ‘discrimination’, ‘prejudice’, ‘citizenship’, ‘social justice’, ‘socially constructed’, ‘Marxism’, ‘Post Modernism’ and ‘Feminism’. The overall picture is that disability has become increasingly politicised along politically correct lines to the detriment of society as a whole and, eventually, even to the disabled themselves. This is largely caused by the endemic trahison des clercs in our tax-consuming and coercively monopolised university system. (shrink)

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)

This collaborative essay experimentally applies the insights of Mary Shelley's 1818 gothic fantasy Frankenstein to clinical interactions between present-day physicians and the patients they, akin to Shelley's human protagonist, so often seem to bring (back) to life. Because that process is frequently fraught with unspoken elements of ambivalence, disappointment, frustration, and failure, we find in Shelley's speculative fiction less a cautionary tale of overreach than a dynamic parable of the role that the unspoken, the invisible, and the unknown might play (...) in contemporary physician/patient relationships. Playing with that parable, we consider its relevance to four often unacknowledged dynamics that shape physician/patient interaction: commitment to a false binary of life and death; the tyranny of normative aesthetics; shared negative affect; and the ethics of care and care-denial. To "speak with Frankenstein" is, we show, to make space for the otherwise unspeakable. The result is a more complete model of narrative medicine that accommodates to its ideal of open communication and full attention the persistence of what cannot be said, seen, or known--only imagined and approximated. (shrink)

In his contribution, “Critical Investments: AIDS, Christopher Reeve, and Queer/Disability Studies,” Robert McRuer calls for the recognition of the points of convergence between AIDS theory, queer theory, and disability theory. McRuer points out ways in which minority identity groups such as people with AIDS, gays, lesbians, and bisexuals, and those with so-called disabilities, whose status has been described by others as “impaired,” have resisted this judgment by calling its ideological underpinnings into question. He contends that a critical alliance between AIDS (...) theory, queer theory, and disability theory will ultimately help us to realize the full range of different kinds of bodies and corporeal experiences, while also combating the application of normativizing judgments. (shrink)

In this thesis a new concept called ‘Lexism’ is proposed, outlined and defended. The dyslexia debate is currently in a state of deadlock. The origin of this stalemate is not an empirical problem but a conceptual one. The conceptual problems with dyslexia, and the existence of dyslexics, are both recognised, but the contradictions between them remain unresolved. For this reason a philosophical approach has been adopted. First, the conceptual foundations are set out to enable the recognition of Lexism as a (...) concept, and to reject the concept of dyslexia whilst recognising the existence of dyslexics. Second, Lexism as a concept, is evaluated, compared and contrasted with what some might consider to be the strongest existing account of dyslexics’ social experiences, that of Riddick’s social model of dyslexia. Third, the key aspects and features of Lexism as a new concept are set out. The original contribution to knowledge is that Lexism enables us to see that dyslexics are defined by Lexism not dyslexia. Lexism, it is argued, in a certain sense, is comparable to, though not the same as, racism, sexism and homophobia. This enables us break the current deadlock and move away from sterile debates over dyslexia’s existence, to how dyslexics are Othered by a literate society. Lexism raises new and significant implications for the dyslexia debate, but also government policy, educational practice, assessments and reasonable adjustments for dyslexics. (shrink)

The practice of terminating a pregnancy following the diagnosis of a fetal abnormality raises questions about notions of bodily normality and the ways these shape ethical decision-making. This is particularly the case with terminations done on the basis of ostensibly minor morphological anomalies, such as cleft lip and isolated malformations of the limbs or digits. In this paper, I examine a recent case of selective termination after a morphology ultrasound scan revealed the fetus to be missing a hand . Using (...) the work of Georges Canguilhem, I show that a person with acheiria could be considered normal. Further, I show that this case reveals a kind of “undecidability” in the significance of fetal sex/gender and disability in termination. From this, I consider the conceptual interaction of disability with sex/gender, to argue that the ethics of disability termination are not as distinct from those of sex/gender selection as is commonly supposed. (shrink)

This paper charts the concepts of grip and the bodily auxiliary in Maurice Merleau-Ponty to consider how they find expression in disability narratives. Arguing against the notion of “maximal grip” that some commentators have used to explicate intentionality in Merleau-Ponty, I argue that grip in his texts functions instead as a compensatory effort to stave off uncertainty, lack of mastery, and ambiguity. Nearly without exception in Phenomenology of Perception, the mobilization of “grip” is a signal of impending loss, and is (...) offered as a strategy for managing failure rather than as an example of sure-footed mastery. I read Merleau-Ponty alongside Mary Felstiner's Out of Joint: A Public and Private Story of Arthritis to explore these other, attenuated dimensions of grip. Finally, the paper turns to Harriet McBryde Johnson's memoir Too Late to Die Young as an example of a way of thinking disabled embodiment otherwise. (shrink)

The growing field of feminist disability studies explores how human bodies are interpreted through cultural values and expectations surrounding physical and mental ability. This paper contributes to and expands upon this conversation by examining how the ideal of “able-mindedness” functions to maintain racial divisions and inequalities through attributions of cognitive and psychiatric disability to bodies of color. Drawing upon contemporary examples from popular social media, public policy, and academic discourse, the author shows how racialized and nonnormatively gendered bodies are identified (...) and interpreted through norms of able-mindedness and used as markers against which the ideal of the able mind is upheld. This “discourse of pathology” operates insidiously within academic theorizing by remaining largely invisible because it tracks our deeply ingrained assumptions about the undesirability of cognitive and psychiatric disability. The author argues that because of the entanglement of race with disability, so long as the normalizing and privileging of the ideal of able-mindedness goes unchallenged and we maintain the myth that there exists a normal mental state, both racism and ableism remain very much alive, including within the academy. (shrink)

Goal setting is an important professional method and one of the key concepts that structure a practical field such as physical rehabilitation. However, the actual use of goals in rehabilitation practice is much less straightforward than the general acceptance of the method suggests as goals are frequently unattained, modified or contested. In this paper, I will argue that the difficulties of goal setting in day-to-day medical practice can be understood by unravelling the normative assumptions of goal setting, in this case (...) three different tensions that come along with it. First, goals are developed for a future state that may require activities that clash with necessities of the present situation. Second, professionals in clinical rehabilitation centres elaborate goals for an environment that differs in terms of spatial and social characteristics from the environment in the centre, where people train for the accomplishment of goals. Finally, goal setting requires active patient participation and individual control that sometimes appears impossible, unrealistic, and undesirable. I will describe how professionals deal with these tensions in a creative and dynamic way. With my articulation of the assumptions of goal setting, I hope to contribute to the self-reflection of rehabilitation practitioners as well as to theoretical discussions of goal setting in contexts other than rehabilitation. (shrink)

This article discusses the acquisition of a physical impairment/disability through voluntary body modification, or transability. From the perspectives of critical genealogy and feminist intersectional analysis, the article considers the ability and cis*/trans* axes in order to question the boundaries between trans and transabled experience and examines two assumptions impeding the conceptualization of their placement on the same continuum: 1) trans studies assumes an able-bodied trans identity and able-bodied trans subject of analysis; and 2) disability studies assumes a cis* disabled identity. (...) The perception of transsexuality and transability as mutually exclusive phenomena results from a nonintersectional analysis of transsexuality as an issue of sex/gender, but not of ability, and of transability as an issue of ability, but not of sex/gender. Difficulty recognizing continuities between these phenomena thus stems from an ableist interpretation of sex/gender and a cisnormative* interpretation of ability. This article aims to: 1) enrich intersectional analysis in trans and disability studies and transability scholarship; 2) complicate disability studies, in which disabilities are often presumed to be “involuntary,” and encourage the decentering of a cis* subject; 3) encourage trans studies to decenter an able-bodied subject; and 4) advocate for increased dialogue and the creation of alliances between trans and disability studies and movements. (shrink)

In this article, we explore the possibility of adding a new role to the clinical encounter: an illness doula. Even though research and education in medical humanities and narrative medicine have made improvements in humanizing healthcare, progress is slow and ongoing. There needs to be an intervention in the practice of healthcare now for people currently going through the system. An illness doula, like a birth doula, would facilitate and insure that attention is paid to the personal needs and desires (...) of the patient in the present system. We envision illness doulas having the ability and availability to accompany the patient throughout the healthcare process, to help communicate with clinicians, and to ensure that patient preferences are understood and respected along the way. We discuss how this idea emerged through the clinical encounters of two of our authors, the possibilities and limitations of creating a new role for illness doulas, and the logistics of how to put this new role into play. (shrink)

More than two decades after the passage of the Americans with Disabilities Act , people with disabilities continue to live at the margins of American democracy and capitalist society. This persistent exclusion poses a conundrum to political theorists committed to disability rights, multiculturalism, and social justice. Drawing from feminist insights, specifically the work of Nancy Fraser, among others, I examine the necessary conditions for meaningful inclusion to be realized within a deliberative democracy. Using Fraser's concept of “participatory parity” as a (...) proxy for inclusion, I strategize how to overcome informal barriers—economic inequality and misrecognition—that persist even after disabled people are granted the legal right to participate. The analysis concludes that a truly inclusionary and multicultural democracy requires the redistribution of wealth and a more expansive model of political deliberation, one that can recognize unconventional modes of communication through practices of translation. (shrink)

In this paper, we examine Shaun Gallagher’s project of “naturalizing” phenomenology with the cognitive sciences: front-loaded phenomenology. While we think it is a productive proposal, we argue that Gallagher does not employ genetic phenomenological methods in his execution of FLP. We show that without such methods, FLP’s attempt to locate neurological correlates of conscious experience is not yet adequate. We demonstrate this by analyzing Gallagher’s critique of cognitive neuropsychologist Christopher Frith’s functional explanation of schizophrenic symptoms. In “constraining” Gallagher’s FLP program, (...) we discuss what genetic phenomenological method is and why FLP ought to embrace it. We also indicate what types of structures a genetically modified FLP will consider, and how such an approach would affect the manner in which potential neurological correlates of conscious experience are conceptually understood and experimentally investigated. (shrink)

In the formation of the multi-disciplinary field that investigates the participation of disabled persons in all forms of physical activity, little ethical and philosophical work has been published. This essay serves to contextualise a range of issues emanating from adapted physical activity (APA) and disability sports. First, we offer some general historical and philosophical remarks about the field which serve to situate those issues at the crossroads between the philosophy of disability and the philosophy of sports. Secondly, we bring brief (...) but critical attention to the contestation of key concepts such as ?ability? and ?normality? and the recent criticisms of polarisation of the medical and social models of disability. Finally, we show how these conceptual issues are implicated in the whole spectrum of contexts of APA and disability sports from the ethics of research with and for the disabled, to coaching, rehabilitation and teaching, and sports administration, that are predicated on key ethical concepts including empathy, entitlement and equity. (shrink)