In this study, we sought a better understanding of how poor women made meaning of their poverty and health. Twenty research participants used varied, multiple, and at times contradictory discourses that shaped their identities as both legitimate and powerful and illegitimate and powerless. We identified four discourses in the women's talk—illegitimate dependencies, legitimate dependencies, overwhelming odds, and critique and collectivism. These four discourses revealed complexes of meanings and networks of interpretation that subverted, accommodated, and reinterpreted dominant discourses of poverty and (...) health. This examination is relevant for feminist researchers attempting to understand the impact of dominant discourses in the lives of socially marginalized women who continually struggle to establish and strengthen claims to legitimacy and moral worth. (shrink)

This paper argues that there are reasons to believe that there is no single concept or category which demarcates all individuals who have a disability from those individuals who do not. The paper begins by describing that I call ‘a Unified Concept View of Disability’ and the role that such a view plays in debates about the nature of disability. After considering reasons to think that our concept of disability is not unified in the way that the Unified Concept View (...) assumes, I outline what a non-unified approach to disability might look like. The paper concludes by considering implications of rejecting the Unified Concept View of disability. (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 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)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (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)

Since the completion of the human genome project in 2003, genomic sequencing, analysis, and interpretation have become staples of research in medicine and the life sciences more generally. While much ink has been spilled concerning genomics’ precipitous rise, there is little agreement among scholars concerning its meaning, both in general and with respect to our current moment. Some claim genomics is neither new, nor noteworthy; others claim it is a novel and worrisome instrument of newgenics. Contrary to the approaches of (...) Foucault scholars in both camps, in this paper I utilize research in philosophy of disability to argue that genomics is indeed noteworthy as a unique form of biopower and that its primary function is to precisify impairments in contradistinction to disability. I call the force at play in this process genopower. (shrink)

This article invites disability scholars to “get fat,” that is, to support the goals of the fat justice movement. I argue that the contemporary politics of fatness can productively be read through the lens of disability studies’ social model. At the same time, I mobilize feminist critiques of the social model to push fat disability studies toward a more in-depth engagement with the topics of health and illness. Additionally, I contend that feminist scholars’ accounts of our personal relationships to fatness (...) and disability can make crucial contributions to our scholarly work. These arguments take shape within a new interpretive framework that I introduce: “setpoint epistemology,” which brings together the feminist disability studies notion of “sitpoint theory” and the scientific concept of “setpoint theory.”. (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. (...) These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)

Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social-constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies must attend to the common, chronic gynecological condition endometriosis when theorizing pain. Endo is particularly important for FDS analysis because the highly (...) feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain-centric model of disability that politicizes pain through social-constructionist and medical models of disability by attending to the lived experiences of pain. (shrink)

In The Minority Body, Elizabeth Barnes rejects prevailing social constructionist accounts of disability for two reasons. First, because they understand disability in terms of oppressive social responses to bodily impairment, they cannot make sense of disability pride. Second, they maintain a problematic distinction between impairment and disability. In response to these challenges, this paper defends a version of the social model of disability, which we call the Social Exclusion Model. On our account, to be disabled is to be in a (...) bodily or psychological state that is represented as an impairment in the prevailing ideology of one’s society, and to be excluded from valuable activities on the basis of this representation. While this model refers to a distinction between disability and impairment, it makes no presuppositions about which bodies function ‘normally’ and which do not. It is the ideology of impairment rather than impairment itself that does any work to determine whether a person is disabled. We argue that this model answers some of the important objections that Barnes raises against prevailing social constructionist accounts of disability, and that it’s focus on the oppressive social positioning of disabled people gives it explanatory power that Barnes’s own account lacks. (shrink)

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis. Myasthenia Gravis is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness. Currently, I have only minor symptoms, I am not seriously impaired, and I do not suffer from any social disadvantage because of my illness. Yet, my life and my (...) body since my diagnosis feel different than before. In this paper I aim to make this feeling intelligible and propose that it is a state of what I call ‘latent impairment’. Latent impairment is a state of being ‘in between’, different from being actually impaired and also different from being abled-bodied. The theory takes its cues both from social constructionist theories of disability as well as theories of (chronic) illness and their focus on the importance of subjectivity. Furthermore, I suggest that a phenomenological understanding of latent impairment can show possible ways of becoming an ally to the DRM. (shrink)

This paper explores the interconnectedness of persons with disabilities, technologies and the environment by problematizing Western notions of the independent, autonomous subject. Drawing from Deleuze and Guattari’s reconfiguration of the static subject as active becoming, prevailing discourses valorizing independence are critiqued as contributing to the marginalization of bodies marked as disabled. Three examples of disability “dependencies”—man-dog, man-machine, and woman-woman connectivities—are used to illustrate that subjectivity is partial and transitory. Disability connectivity thus serves a signpost for an expanded understanding of subjectivity (...) and suggests a radically altered ethics that is no longer premised on individual rights. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks. The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: rehabilitation and services for people with disabilities; chronic illness and cancer care; senior's health; community support services; children's health; health promotion; and mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through particular (...) interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

Disability activists' redefinition of “disability” as a social, rather than a medical, problem attempts to reassign causality. We explicate the untenable implications of this approach and argue this definition is maleficent, unjust, and inconsistent. Thus, redefining disability as a socially caused phenomenon is, from a moral point of view, ill-advised.

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)

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)

This paper argues that disabled people can be healthy. I argue, first, following the well-known ‘social model of disability’, that we should prefer a usage of ‘disabled’ which does not imply any kind of impairment that is essentially inconsistent with health. This is because one can be disabled only because limited by false social perception of impairment and one can be, if impaired, disabled not because of the impairment but rather only because of the social response to it. Second, I (...) argue that it is often wrong to use the term ‘healthy’ in a way that makes health inconsistent with any degree whatsoever of health-relevant bodily dysfunction. Whether someone is ‘healthy’ properly-so-called depends on standards of health presupposed in conversational context. Sometimes, I argue, these standards are or ought to be lax enough to allow some people with some health deficits still to count as ‘healthy’ per se. Taking inspiration from David Lewis and Mary Kate Mcgowan, I go on to argue that denying that someone is ‘healthy’ in a context typically succeeds in shifting going presuppositions to require standards strict enough to make that denial acceptable. And this, I conclude by arguing, often constitutes an abuse of conversational power. (shrink)

As many scholars have noted, the concept of “dignity” has historically been defined in several ways, creating conflict and confusion when the concept is invoked in the present. The concept has also been historically exclusive of various groups of individuals; some contemporary accounts still do not understand certain individuals with disabilities as possessing dignity. I examine the strength of three strands of dignity definitions and determine whether any groups are unjustifiably excluded due to disability status. Eva Kittay puts forward a (...) theory that purports to include all humans which, although promising, is vulnerable to critique. I offer revisions of Kittay’s account that address the charge of over-inclusion. However, I note the lingering issues with my revision, particularly that even the best version of Kittay’s account requires the acceptance of some sort of speciesism. (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)

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have good reason to believe (...) that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (shrink)

Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of (...) disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end. (shrink)