The rise of mobile communication applications and technologies presents promising therapeutic and accessibility-related interventions for neurodivergent users. However, top-down approaches in human-computer interaction research often prioritize the needs and goals of allistic and neurotypical researchers and secondary stakeholders in media creation. Furthermore, media technologies are created with a one-size-fits-all approach, with the intent of rehabilitating or curing neurodivergent ways of being. This article imagines neuroqueer technoscience as an extension of crip technoscience that amplifies new styles of relationality, self-expression, and communication (...) practices within the development of information and communication technologies. Using an interdisciplinary framework informed by crip technoscience and human-computer interaction research, the author presents three tenets for mediating neuroqueer subjectivities. (shrink)

In this paper, I consider what one might call a negative-critical turn in egalitarian political theorizing, according to which egalitarians should not begin with a positive account of how a society...

This is the introduction to the inaugural issue of The Journal of Philosophy of Disability.

Testimony by disabled people concerning the relationship between their experiences and overall well-being has long been an object of social scientific and humanistic study. Often discussed in terms of “the disability paradox,” these studies contrast the intuitive horribleness of certain impaired states against the testimonial evidence suggesting that people in such states do not in fact experience their lives as horrible. Explanations for why such testimonial evidence is suspect range from claims about adaptive preferences to issues of qualitative research methodology. (...) In this paper, I argue that the problem lies not with the evidence, but the intuitions in question. Using the disability paradox as a case study, I further argue against the use of the concept of intuitive horribleness in social epistemology and beyond. I contend that testimonial and hermeneutical injustices are baked into most deployments of the concept, and even if one were to justify its use in select cases, it should be accompanied with prima facie suspicion. In conclusion, I discuss the implications of this analysis for the literature on transformative experience and also for the stakes of multi-cultural, historically informed philosophical inquiry more generally. (shrink)

This conversational opinion article between two parties – Kate, a disability performance scholar and Sarah, an interdisciplinary artist-scholar with lived experience of disability – considers the dancing body as redeemer in the specific case of a dancer experiencing ‘chemo fog’, or Chemotherapy-Related Cognitive Impairment (CRCI) after undergoing oncological treatments for Hodgkin Lymphoma. This work draws on Pini’s own lived experience of illness (Pini & Pini, 2019) in dialogue with Maguire-Rosier’s study of dancers with hidden impairments (Gibson & Maguire-Rosier, 2020). In (...) an exploratory account based on an interview with one another, the authors ask: when our senses and perceptions of ourselves and the world we become are obfuscated, what is the nature of the new relationship between the performing self and its absent body/mind/world? How can we shape our narrative and articulate who we are, what we are doing or where we are going, if we are moving in the ‘fog’? Our discussion reveals how Pini’s dancing body elucidates healing, while recovering an agentic perspective in her experience of alienation and frustration tied to chemo fog and related impairments. With this work we offer an original perspective on how a dancing body can resist theoretical diagnosis. (shrink)

This paper presents the early findings of research into the experiences of pain for those who live with chronic pain and engage in BDSM (bondage and discipline, domination and submission, sadism and masochism), explored using a critical crip approach rooted in crip theory and feminist disability studies. The research took the form of a series of interviews with eight disabled people living with chronic pain who experience pain in their BDSM practices, developing a narrative of experiences. The majority of those (...) living with chronic pain, or who have diagnoses of chronic illnesses causing chronic pain, are women. Chronic pain is frequently assumed to be similar to acute pain; however, thinking through pain in terms of normativity and able-bodymindedness reveals the ableist structures that underpin normative attitudes towards pain and those who are in pain. Pain is understood as dehumanising—and thus the person living with chronic pain is understood as not human, abnormal, and disabled. The disabled body, the body in pain, is a horrifying object of abjection, and the non-disabled observer assumes that to be in pain is to suffer; therefore, living with chronic pain is understood as an ontological impossibility and must be stopped. BDSM is a series of practices forming a space in which the people living with chronic pain in this study are able to engage with their somatic experience in ways that do not expect normalcy, while being disabled and living with chronic pain gives them space to explore non-normative sexual practices. (shrink)

This chapter canvases a number of ways that issues surrounding disability intersect with social epistemology. We begin with a discussion of how social epistemology as a field and debates concerning epistemic injustice in particular would benefit from further (a) engaging the fields of disability studies and philosophy of disability and (b) more directly addressing the problem of ableism. In section two, we turn to issues of testimony, “intuitive horribleness,” and their relationship to debates concerning disability and well-being. We address how (...) the regular lack of uptake of disabled people’s testimony can lead to a number of structural rather than merely individual epistemic injustices, and we also consider how the very nature of some disabilities make testimonial issues more complicated. We conclude by discussing various norms of social interaction and how they can systematically disadvantage Autistic people in particular with respect to all the issues discussed herein. (shrink)

Philosophers often enroll disabled bodies and minds as objects of thought in their arguments from marginal cases and in thought experiments: for example, arguments for animal ethics use cognitively disabled people as a contrast case, and Merleau-Ponty uses a blind man with a cane as an exemplar of the relationship of technology to the human, of how technology mediates. However, these philosophers enroll disabled people without engaging significantly in any way with disabled people themselves. Instead, disabled people are treated in (...) philosophy as literal objects—and in many cases, as less than human. (This sense of a categorical difference between disabled and nondisabled people is becoming especially clear during the Covid-19 pandemic, as I write this article.) Philosophical reflection thus makes assumptions—often wrong—about disabled people’s lives, experiences, and relationships to technology. Outside of philosophy as well as in, disabled people are not regarded as experts about our own experiences and lives; our testimony is paternalistically written over. We need better consideration of disabled people as people as we consider the future. Lack of disabled people’s points of view in philosophy colors—and sometimes invalidates—views of technological change. (shrink)

The purpose of this paper is to contribute to the ongoing analyses that aim to confront the problem of marked variation. Negatively marked differences are those natural variations that are used to cleave human beings into different categories (e.g., of disablement, of medicalized pathology, of subnormalcy, or of deviance). The problem of marked variation is: Why are some rather than other variations marked as epistemically or culturally significant or as a diagnostic of pathology, and What is the epistemic background that (...) makes these—rather than other variations—marked as subnormal? For Wilson (2018a), critical examination of the problem of marked variation is central to understanding the epistemology of medicalized pathology that made the history of eugenics possible. My aim is to explore the role marked variation plays in eugenic and other problematic classifications and the inferences they appear to license. I pay particular attention to the normative valuations of marked variations, how these valuations affect the inferences that are made by others about those possessing the variation, and how those possessing the variation perceive themselves. In the final sections, I illustrate this by critically discussing three putative kinship conceptions of race. I rely on these to extend the scope of the puzzle of marked variation from the context of historic and current markings of an individual’s variation as disability in the eugenics movement to historic and current markings for assigning putative racial ascriptions to individuals and groups. Lastly, I suggest that the problem of marked variation is a problem that looms over any epistemic account that is dependent upon sorting or classifying. (shrink)

By ruling out questions of impairment from the social critique of disability, Disability Studies analyses establish a limit point in the field. Of course the setting of “limits” enables possibilities in multiple directions as well as fortifies boundaries of refusal. For instance, impairment becomes in DS simultaneously a productive refusal to interpret disabled bodies as inferior to non-disabled bodies and a bar to thinking through more active engagements with disability as materiality. Disability materiality such as conditions produced by ecological toxicities (...) serve as active switch-points for creative corporeal navigations of the interaction between bodies and environments.In fact in this paper we want to propose a more “lively” definition of disability materiality to existing definitions of impairment as limiting expressions of non-normative bodies. We have no useful ways of explaining disability as adaptation and it’s time we begin the process of theorizing more active ideas of materiality that extend existing ideas of disability beyond simplistic conceptions of socially rejected biologies made available by social constructivist thought. (shrink)

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)

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 encyclopedia entry providing an overview of the philosophical issues entailed in the theory and practice of "identity politics." Open access and online. Regularly updated.

Saba Mahmood’s anthropological work studies the gain in skills, agency and capacity building by the women’s dawa movement in Egypt. These women increase their virtue toward the goal of piety by following dominant, often patriarchal norms. Mahmood argues that “teleological feminism” ignores this gain in agency because this kind of feminism only focuses on opposition or resistance to these norms. In this paper I defend Mahmood’s “anti-teleological” feminist work from criticisms that her project valorizes oppression and has no vision for (...) a nonoppressive feminist future. I argue the future envisioned by teleological feminists gets caught in “the Hegelian” trap of replicating past oppression in their feminist future. I find in Mahmood’s work the tools to escape this trap. I argue, rather than a movement of overcoming oppression, Mahmood’s work suggests an immanent and creative movement that emphasizes difference for a truly new future. I turn to a Bergsonian metaphor and argue that this movement can be seen as akin to the movement of biological evolution. I conclude using the work of Eve Sedgwick that the Egyptian women that Mahmood studies are being read in a “paranoid” fashion and demonstrate using Leila Ahmed a better “reparative” reading of these women. (shrink)

This contribution includes three selected works from an exhibition on _Cyborg Encounters_. These works deal with hybrid connections of human and non-human species that (might) emerge as a result of enhancement technologies and bio-technological developments. They offer not only an artistic exploration of contemporary but also futuristic aspects of the subject. Followed by an introduction by Melike Şahinol, _Critically Endangered Artwork_ (by Ayşe Melis Okay) highlights Turkey’s ongoing problems of food poverty and the amount of decreasing agricultural lands. It displays (...) seeds of a promising endemic plant to mitigate these problems using the seeds of the _Thermopsis Turcica_, a herbaceous perennial endemic plant. _Ecomasculinist Pregnancy_ (by Burak Taşdizen and Charles John McKinnon Bell) follows the design fiction methodology and illustrates a future scenario through a patient’s diary and the medical letters he receives during his pregnancy with an extinct sea-lion. _Polluted Homes_ (by Beyza Dilem Topdal) is a fictional art installation consisting of polychaete species evolved in time under the ecological circumstances prevalent in the Bosphorus and the Sea of Marmara today. These works show, that manufacturing life has consequences, not only for the human body and its physical appearance, but also, for example, for gender orders, the social structure of society, and even the environment, and thus for (re)shaping (non)living matter and their environments. This Art-Science Collection intends to provide an impetus for debate about the extent to which cyborg encounters should be taken seriously. (shrink)

In this paper, I explore the terrain of craft knowing as an area of expansion for feminist relational theory toward materials, instruments, and design work. I argue that an un-developed attent...

People with gut issues are often constrained in the foods they are able to eat. The choices they are able to make about food, however, are shaped not merely by specific medical and dietary needs but also by social, relational, and environmental factors such as the presence of trusted and supportive others who take their needs seriously. Drawing on work in disability theory and relational autonomy, as well as interviews undertaken in summer 2019, the paper explores the ways that choices (...) are enabled or undermined, and argues that these should be taken into account in work on the ethics and politics of food. (shrink)

In the polarized debates about abortion and voluntary euthanasia, disability advocates, who normally align with left-wing social forces, have tended to side with conservative and religious voices in expressing concerns about the impact of technological and sociopolitical developments on disabled futures. This paper draws on the social model of disability and the virtue ethics tradition to explain the alignment between the religious and disability perspectives, and the theory of transformative choice to highlight the limits and biases of the pro-choice logic. (...) Yet, it also recognizes the inherent contradiction of disabled advocates taking a paternalistic position against the personal agency of women and people facing terminal illnesses. A disability perspective serves the discussion of abortion and euthanasia as an encouragement to work together for the building of a society that enables people with diverse disabilities to exist and flourish, and helps pregnant women, people facing disabling and terminal illnesses, and politicians and social influencers to make informed choices. (shrink)

In this chapter we argue for biophilosophy as a queerfeminist and posthumanities methodology that attends to the question of life by focusing on multiple differences and transformations, materiality and processuality, as well as relations, intra-actions, and disconnections. By combining both the ontological and ethical concerns that go beyond what is conventionally seen as “life”, biophilosophy offers a critical and innovative approach to the issues of death, extinction, (un) liveability, terminality, and toxicity, among others, which all form the backbone of the (...) environmental crises and changing conditions of life on Earth, often framed as the Anthropocene. In what follows, we first discuss select theorisations and implications of the “life/death” coupling as an ethico-political question; subsequently we elaborate the concept of biophilosophy as a methodology; and finally, we propose two examples where we test biophilosophy as a framework that allows us: (1) to engage with the enmeshment of life and death through the concept of the non/living, and (2) to explore the concept of toxic embodiment as an onto-ethical condition we all (human and non-human) are differentially immersed in. (shrink)

This paper has two goals. The first is to argue that the field of bioethics in general and the literature on ideal vs. nonideal theory in particular has underemphasized a primary problem for normative theorizing: the role of conditioning principles. I define these as principles that implicitly or explicitly ground, limit, or otherwise determine the construction and function of other principles, and, as a result, profoundly impact concept formation, perception, judgment, and action, et al. The second is to demonstrate that (...) ableism is one such conditioning principle and that it undermines the field of bioethics and the practice of biomedicine from achieving the aim of justice as fairness. After briefly addressing the history and critiques of principlism in bioethics, I lay out and defend my account of conditioning principles. I then argue that ableism is one such principle and demonstrate it at work through an analysis of a storied debate between Eva Kittay, Peter Singer, and Jeff McMahan. In conclusion, I contend that the ethical and philosophical dangers of conditioning principles are too easily exacerbated by ideal theory frameworks, and I do so by demonstrating how they are especially liable to generate epistemic injustice, especially contributory and hermeneutical injustice. (shrink)

Drawing from contemporary blog data, this article examines an emerging project termed “neuroqueer.” Neuroqueer is a collaboration of activists, academics, and bloggers engaging in online community building. Neuroqueer requires those who engage in it to disidentify from both oppressive dominant and counterculture identities that perpetuate destructive medical model discourses of cure. It is a queer/crip response to discussions about gender, sexuality, and disability as pathology that works to deconstruct normative identity categories. Blog members employ neuroqueer practices to subversively combat exclusion (...) through rejection of able-hetero assimilation and counteridentification in favor of disidentification. Of particular interest for this special issue are the ways in which neuroqueer perspectives build more fluid conceptualizations of both gender and intersectionality through conscious disidentification from neurotypical norms and medical notions of cure on which they are often unconsciously based. (shrink)

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)

This paper interrogates and reclaims clown practices in children’s rehabilitation as ‘foolish.’ Attempts to legitimize and ‘take seriously’ clown practices in the health sciences frame the work of clowns as secondary to the ‘real’ work of medical professionals and diminish the ways clowns support emotional vulnerability and bravery with a willingness to fail and be ridiculous as fundamental to their work. Narrow conceptualizations of clown practices in hospitals as only happy and funny overlook the ways clowns also routinely engage with (...) sadness, despair, discomfort and many other ways of being and doing. Our exploration of clown practices as foolish exposes the ways children’s rehabilitation upholds particular neoliberal models of success and invites a re-centring of rehabilitation and health care research and practice towards relationship building, supporting meaningful projects and a continued nurturing of aesthetic and pleasurable ways of being-in-the-world in the present moment as valuable unto themselves. (shrink)

The educational aims described by educational philosophers rarely embrace the full range of differences in intellectual ability, adaptive behavior, or communication that children exhibit. Because envisioned educational aims have significant consequences for how educational practices, pedagogy, and curricula are conceptualized, the failure to acknowledge and embrace differences in ability leaves open the question of the extent to which students with intellectual disabilities are subject to the same aims as their “typically-developing” peers. In articulating and defending valued aims of education, educational (...) philosophers tacitly or expressly concede that particular aims will be ill suited to many children with intellectual disabilities, and that separate aims will therefore apply to them. This paper evaluates the philosophical reasoning behind this conclusion that some people, by necessity, must be governed by separate educational aims, to be decided separately and secondarily. The author calls this the “deferral stance.” First, the paper outlines concerns about a particular ability-biased social and epistemic context in which theorizing about educational aims takes place. The author then examines assumptions that underpin the logic of deferral, arguing that the logic proves flawed when subjected to conceptual and empirical scrutiny. The paper concludes by outlining an inclusive approach—the affirmative stance—to theorizing about educational aims that resists the logic of exclusion and deferral. (shrink)

Drawing upon the practice of caregiving and the insights of feminist care ethics, I offer a phenomenology of caregiving through the work of Eva Feder Kittay and Emmanuel Lévinas. I argue that caregiving is a material dialectic of embodied response involving moments of leveling, attention, and interruption. In this light, the Levinasian opposition between responding to another's singularity and leveling it via parity-based principles is belied in the experience of care. Contra much of response ethics’ and care ethics’ respective literatures, (...) this dialectic suggests that they are complementary in ways that productively illuminate themes of each. I conclude by suggesting that when response and care ethics are thought together through the experience of caregiving, such labors produce finite responsibility with infinite hope. (shrink)

This Discussion Note calls for attention to the cultural practices of Neural Engineering as part of the life sciences as practices and technologies of manufacturing life. Through focusing on Disability, Ableism, and especially Technoableism within the field, I point out instances of onto-epistemological violence, which influence the likelihood of survival of disabled people individually and as a group. By drawing on Crip Technoscience, a method assemblage is introduced that allows to address these issues in an intersectional-kyriarchal understanding of interlocking systems (...) of privilege and oppression through generative critique and productive collaborative work. Criptical Neural Engineering is dedicated to disability justice and disability gain. It centers disabled people as epistemic activists and demands response-ability and accountability from non-disabled people, specifically engineers that want to build adaptive technologies with disabled people. (shrink)

This article engages with both queer theories of temporality and new materialist theories of kinship in order to analyse the reproductive politics of Denis Villeneuve’s 2016 film Arrival. It does so in order to speculate on what happens to the concept of reproductive choice when time is in a loop. Arrival uses time travel to disrupt the linearity of reproduction by allowing its protagonist, Louise, to see that a future child will die an early, horrible death, yet still having her (...) choose to become pregnant. It is my contention that this narrative decision untethers reproduction from futurity in ways that might be productive for rethinking the heteronormative futurism at the heart of contemporary reproductive politics. (shrink)

The contemporary emergence of the concept ‘debility’, which pertains to a broad swathe of humanity whose ordinary lives simply persist without ever getting better, shares a time span with an acute critique of neo-liberal biopolitics. Where capital has historically relied on a population that through its labour necessarily becomes debilitated, the newer model of understanding references the intrinsic profitability of debility itself. The two dimensions overlap and co-exist, but what I shall pursue here are the implications of recognising that, at (...) the most fundamental level, it is in the interests of neo-liberalism to produce and sustain bodies as debilitated and therefore susceptible to a range of market commodities that hold out the promise of therapeutic interventions into the relative failures of physical, cognitive and affective embodiment. In previous work, I have argued strongly for the inherent vulnerability of all bodies, but in considering here a more overtly politicised context, it becomes possible to readdress the questions posed by Jasbir Puar: ‘which bodies are made to pay for “progress”? Which debilitated bodies can be reinvigorated for neoliberalism, and which cannot?’ And at the present moment, writing at a time of imposed austerity, I would add, what, if anything, is lost in the deployment of the term debility instead of disability? (shrink)

In this paper, I examine the question of whether there is justification for regulations that place limits on food choices. I begin by discussing Sarah Conly’s recent defense of paternalist limits on food choice. I argue that Conly’s argument is flawed because it assumes a particular conception of health that is not universally shared. I examine this conception of health in some detail, and I argue that we need to shift our focus from individual behaviors and lifestyle to the broader (...) social and environmental context. Such a shift allows us to see the ways in which industry practices are negatively impacting our well-being (a broader concept than “health”). I argue that state regulatory activity surrounding the conditions under which food is grown, processed, marketed, and sold needs to be strengthened. As a result, there are likely to be some indirect limitations on food choice. These indirect limitations are justified, but regulations in which the goal is to change individual behavior or lifestyle are not. (shrink)

Dominant Western discourses of motherhood have depicted disabled women as incapable of being mothers. In contrast to these representations, recent literature in disability studies has argued that disabled women can provide maternal care and should therefore retain custody over their children. This literature is commendable, but its emphasis on custodial rights excludes from the category of “mother” those disabled women who cannot maintain child custody. In this article, I challenge this exclusion via an account of my experience with my two (...) mothers: my biological mother, who relinquished custody over me because of her inability to provide care, and my maternal grandmother, who raised me as her child. Theorizing this account, I argue that disability studies must adopt a conception of motherhood that recognizes both alternative kinship structures and mothers whose disabilities preclude them from fulfilling normative conceptions of maternal care. I develop such a conception by synthesizing Judith Butler's theorization of queer kinship with Donald Winnicott's rethinking of the maternal subject. I conclude by drawing on this flexible conception of motherhood to argue that my disabled mother's relinquishing of custody over me to her own mother was the very gesture in which she accepted and adopted a maternal role. (shrink)

Agency and representation are viewed as preconditions for democratic action. The dominant understanding of agency and representation is defined in terms of certain capacities and abilities that are considered to constitute the basis of personhood. The article will put into question this understanding and the assumptions that underpin it and argue that it rests on a mistaken conception of human animality – one that reduces the self to an autonomous and disembodied rational mind. The article will also suggest that it (...) is problematic because it marginalizes more than human forms of life – as well as those of us who are differently human – and excludes their points of view from the political processes of world making. In contrast, I will put forward an understanding of agency and representation that is attuned to the relational dimensions of all life on earth. By paying attention to the semiotic propensities that all forms of life share – which entails considering nonlinguistic forms of communication – this article responds to the need for more radically democratic ways of listening, giving voice, and caring for the earth’s beings and the relations that form the conditions for life to flourish. (shrink)

Disability arts has traditionally been understood as that which is led, created, and/or curated by disabled artists. While disability arts and culture in Canada has continued to grow and develop over the last number of decades, I have perceived a notable lack of neurodivergent artists being included at disability arts events and community gatherings. I question if this lack of representation may be due in part to this perception of disability arts as having to be led exclusively by those with (...) lived experience of disability. In this paper, I will critically engage with concepts of inter-abled artistic collaboration, interdependency and the need to re-imagine disability arts leadership structures to better include neurodivergent artists and their allies. I will further position my ideas around this topic within the context of the roundtable discussion on the future of disability arts leadership that took place at the Cripping the Arts Symposium in 2019. (shrink)

Intersectional feminist scholars emphasize how overlapping systems of oppression structure gender inequality, but in focusing on the gendered, classed, and racialized bases of stratification, many often overlook disability as an important social category in determining economic outcomes. This is a significant omission given that disability severely limits opportunities and contributes to cumulative disadvantage. We draw from feminist disability and intersectional theories to account for how disability intersects with gender, race, and education to produce economic insecurity. The findings from our analyses (...) of 2015 American Community Survey data provide strong empirical support for hierarchies of disadvantage, where women and racial minority groups with disabilities and less education experience the highest poverty levels, report the lowest total income, and have a greater reliance on sources outside the labor market for economic security. By taking disability into account, our study demonstrates how these multiple characteristics lead to overlapping oppressions that become embedded and reproduced within the larger social structure. (shrink)

This article presents an archaeological inquiry into the early histories of Quality of Life (QoL) measures, and takes this as an occasion to rethink the concept of the ‘medical model of disability’. Focusing on three instruments that set the ground for the emergence of QoL measures, namely, the Karnofsky Performance Scale (KPS, 1948), and the classification of functional capacity as a diagnostic criterion for heart diseases (Bainton, 1928) and as a supplementary aid to therapeutic criteria in rheumatoid arthritis ( Steinbrocker, (...) Traeger, and Batterman, 1949 ) – I discuss how medicine, throughout the emergence of QoL, began to expand its gaze beyond the confines of the body to what that body does in daily life. Building upon Armstrong et al.’s notion of ‘distal symptoms’ (2007) and Wahlberg’s idea of ‘knowledge of living’ (2018), I propose the notion of disabilitization to encapsulate this expansion of the clinical gaze, through which medicine has come to articulate diseases and their treatments in new ways, and in so doing, has inadvertently created disability as a new kind of knowledge category in itself – a category that is defined not through its reduction to mere pathology, but through its dispersal into everyday life. I present this concept not as a periodization, but as a provocative discontinuity with the totalizing history assumed within the medical model of disability, and in so doing, ask what, in fact, holds ‘the medical model’ together, and whether there might be other ways of understanding medicine’s complex relationship to disability than what the concept of the medical model allows us to envisage. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

This article probes the philosophical and political significance of the relationships between wheelchair activists and their wheelchairs. Analyzing disability memoirs and the work of a professional wheelchair dancer, I argue that wheelers frequently experience complex relationality and queer kinships with their wheels. By bringing the artistry of disabled writers and dancers into conversation with the notions of human–material relations in the work of Donna Haraway, Jane Bennett, Stacy Alaimo, and Mel Chen, I show how alternative animacies shape wheelers’ conceptions of (...) interdependence and movement. The sensuous pleasure they take in their wheels queers conventional conceptions of how humans should relate to things. New materialist philosophy has increasingly drawn attention to the porous boundaries between the human and material world. But where posthumanist philosophers have largely aimed to dethrone the sovereignty of the human, disability activists use alternative animacies to raise up a devalued and discounted portion of humanity: to emphasize the agency and capacity of those whose lives are often cast as pitiable and powerless, to express a queer feminist disability culture and politics, and to claim the transgressive vitality and vibrant artistry of life with disability. (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)

Since its outbreak, the COVID-19 pandemic has generated discourses and practices that directly refer to the semantic universe usually connected to disability and illness. Words such as ‘pre-existing conditions’, ‘risk groups’, ‘accessibility’, and ‘vulnerability’ have become everyday elements of official and informal communications across the globe. In this article, I explore the contradictions that arise from such uses through the lens of crip studies. In the first part, I observe how the idea of vulnerability became mainstream, moving from being usually (...) attached to disability and illness to being depicted as a universal condition. Such a shift serves the double purpose of reinstating the predominance of able-bodiedness as the preferable normalcy and invisibilising the particular conditions of disabled and chronically ill people in the pandemic. In the second part, I discuss the perverse use of the expressions ‘risk group’ and ‘underlying conditions’ as biopolitical tools to reinforce already existing forms of oppression. The third part comprises a reflection on accessibility and the sudden advent of working-from-home. Finally, I reflect on confinement and interdependence as key concepts to draft a politics of transformation that moves from disability and chronic illness to include all experiences of intersectional oppression. As other markers of oppression, illness and disability can determine the possibilities of survival through the crisis, not only because they are linked to bodily fragility but also because of the systemic violence they are immersed in. The knowledge produced from a place of vulnerability can hence show interesting elements to better understand the challenges of this pandemic through an intersectional perspective. (shrink)

Some authors in disability studies have identified limits of both the medical and social models of disability. They have developed an alternative model, which I call the ‘composite model of disability’, to theorise societies’ ableist norms and structures along with the subjective/phenomenological experience of disability. This model maintains that ableist oppression is not the only source of suffering for disabled people: impairment can be as well. From a feminist, queer, trans activist, anti-ableist perspective and using an intersectional, autoethnographic methodology, I (...) apply this composite model of disability to trans identities to consider the potentially ‘debilitating’ aspects of transness. I argue that transness, like disability, has too often been perceived from two perspectives, medical or social, without the benefit of a third option. From a medical perspective, transness is reduced to an individual pathology curable with hormonal/surgical treatments, a conceptualisation that erases structural oppression. From a social point of view, transness is conceptualised as a neutral condition and variation in sex/gender identity. In this model, structural oppression (transphobia/cisgenderism) is seen as the only cause of ‘trans suffering’. I argue that, just as the medical and social models of disability provide limited opportunities for reflection on the complex experience of disability, medical and social understandings of transness, respectively, are insufficient to describe the complexity of trans experience. I explore the possibilities presented by the application of a composite model of disability in trans studies. By both problematising cisgenderist oppression and acknowledging trans people's subjective experiences of suffering through some of the debilitating aspects of transness, this composite model avoids the pitfalls of the medical and social models. The application of tools from disability studies to trans issues uncovers cisnormativity in disability movements and denounces ableism in trans movements. This will, I hope, solidify alliances between these communities and fields of study. (shrink)

What does feminist disability studies contribute to feminist methods? Feminist disability scholars interweave life-writing about their experiences of disability or caring for a disabled person to challenge ableist stereotypes. As such, they foreground their own vulnerability to build disability identity and community. This style of life-writing, while essential, tends to calcify the dichotomy between the disabled and abled—a binary that the field of feminist disability studies aims to destabilise. Building on new work in feminist disability studies, I show how some (...) scholars use life-writing to cultivate an estranging sensitivity. This new sensitivity builds on prior feminist disability studies scholarship to estrange us from 1) the idea that disability is a cohesive identity and community, 2) that disability is always a socially desirable position, and 3) that allegiance to disability rights insulates us from ableist anxiety. By embracing the tension between solidifying and destabilising the meaning of disability, feminist disability scholars can leverage life-writing as a tool of resistance and thereby lessen the threat of conformity that life narratives tend to produce. (shrink)

Drawing on the institutional history of the sperm bank and legacies of eugenics, we consider how spectrums of risk simultaneously constrain and expand possibilities for disability justice. We do so by examining the discourses surrounding US-based Xytex Corporation sperm bank Donor 9623, described as the ‘perfect’ donor but later discovered to have a criminal record and a diagnosis of schizophrenia. Haunted by the dread of disability, we examine how parents mark the fate of their donor-conceived child on a graded spectrum (...) of genetic and psychiatric risk, in need of perpetual monitoring and intervention. Using this case to understand the contemporary reorganization of disability via spectral risk, we advocate for a critical engagement with how disability haunting can enable us to better attend to the effects of the past and present in such a way that provokes a more collectively just future. (shrink)

Writing is central both to the medical diagnostic codification of disability and to disabled people’s efforts to interrupt, complicate, or disrupt dominant medical narratives. This Symposium, like the George Washington University conference from which it takes its name, creates space for diverse modes and genres of claiming authority regarding diagnosis and its cultural and material effects. “Queer” and “crip” interrogations of diagnosis illuminate its status as a cultural phenomenon, embracing culturally disavowed embodiments and embodied experiences as tools for diagnosing inegalitarian (...) social relations and opportunities for cultural interventions. This Symposium traces the workings of diagnostic normativity manifested in experiences such as “disruptive deafness,” unstable bodily materialities, pathologized grief and other forms of affective distress, and “surgical assemblages.” It presents a diverse array of compositions, articulated on each writer’s own terms, addressing a range of embodied experiences through multiple genres and voices, ranging from conversation transcript to scholarly essay, poetry, graphic memoir, and personal essay. Here, laypersons interrupt monologic medical diagnosis, claiming space to compose themselves. Together, the authors trace instances of corporeal “correction” back to the noxious agents, both environmental and political, that consistently breach the boundaries of corporeality. (shrink)

In recent years, the concept of debility has gained a lot of attention. In critical theory and in the critical medical humanities, the concept has come to refer specifically to the general ill-health of ordinary lives under neoliberal capitalism; as such, it has triggered a surge of interest in large-scale affective assemblages that incapacitate multitudes of bodies. This article proposes _neoliberal misfit_ as a conceptual tool to remedy the dissolution of subjectivity in these discussions. Pushing back against Jasbir Puar specifically, (...) it argues that processes of debilitation produce a particular type of subject formation often ignored in this body of work. The article does so by distinguishing this subject formation in three contemporary illness narratives that dramatize encounters between ill bodies and accelerating rhythms, competitive atmospheres, and mobile attachments, respectively. Ultimately, the aim is to help the critical medical humanities capture how neoliberal environments affect the self-perception of people suffering from ill-health. (shrink)

This paper engages with the artistic practice and work of Vanessa Dion Fletcher from my perspective as a non-Indigenous academic and curator. Dion Fletcher and I have worked together over the past several years through discussions about her work, studio visits, and various events. In her art practice, Dion Fletcher uses porcupine quills and menstrual blood to inquire into a range of issues and concepts including Indigenous language revitalization, feminist Indigenous corporeality, Land as pedagogy, decolonization, and neurodiversity. In particular her (...) work confronts the ways that Indigeneity, the queer and gendered body, and disability are rendered expendable. In this paper I engage with Dylan Robinson’s “sovereign sense”: a transcorporeal mode of perception that is affective, land-based, and formed through relations between human and non-humans. Dion Fletcher’s work makes palpable this sense of sovereignty through its unruly and mutating feltness. Further, her work makes visible feminist Indigenous artistic acts of resurgence alongside the frictions at the intersections of settler colonialism and disability. Following Karyn Recollet, I contend that Dion Fletcher’s work activates an Indigenous affective experience of futurity and creative intimacy that in turn imagines disability and Indigeneity as sites through which new pedagogical relations can be formed. (shrink)

This note introduces a framework incorporating multiple sources of evidence into the response to COVID-19 to overcome the neglect of social and psychological causes of illness. By using the example of psychological research on loneliness and its effects on physical and mental health with particular focus on aging and disability, I seek to open further inquiry into how relevant psychological and social aspects of health can be addressed at policy level.