The cochlear implant controversy involves questions about the nature of disability and the definition of “normal” bodies; it also raises arguments about the nature and significance of culture and the rights of minority cultures. I defend the claim that there might be such a thing as “Deaf culture” and then examine how two different understandings of the role of culture in the lives of individuals can lead to different conclusions about the rights of Deaf parents in relation to their children, (...) and about the ethics of public funding for research on cochlear implants. An argument asserting the rights of minority cultures to equal respect and consideration within a multicultural society, informed by communitarian political philosophy, offers the best prospect for the defence of the unique culture(s) of the Deaf. (shrink)

I show how much psychiatric disability is informed by trauma, marginalization, sexist norms, social inequalities, concepts of irrationality and normalcy, oppositional mind-body dualism, and mainstream moral values. Drawing on feminist discussion of physical disability, I present a feminist theory of psychiatric disability that serves to liberate not only those who are psychiatrically disabled but also the mind and moral consciousness restricted in their ranges of rational possibilities.

Just last week (October 4, 2022), the U.S. White House released a blueprint for an A.I. Bill of Rights, consisting of “five principles and associated practices to help guide the design, use, and de...

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate (...) the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion. (shrink)

This paper examines Antonio Altarriba’s presentation of his deceased mother’s life-story in the graphic novel El ala rota (2016) claiming that the author’s personal trauma of mourning reveals the collective trauma of non-politically-engaged Spanish women throughout Spain’s 20th century. El ala rota contributes to the recovery of a new kind of memory by paying homage to a woman who was relegated to the private sphere and who herself believed her stories were not worth telling – a woman who was in (...) the back room of history and lacked the means and mechanism to chronicle her life. The paper demonstrates that, not only does the content of El ala rota give voice to those who did not have one, thus philosophically paralleling the aims of the Recovery of Historical Memory and the exhumations of mass graves in Spain, but also, that its specific form of comics calls attention to the way society engages with the recovery of historical and collective memory specifically with regard to gender. (shrink)

In Feminist theory: from margin to center, feminist theorist bell hooks questioned the existing feminist discourses during her time by pointing out the lack of a solid definition of feminism and the predominance of white, privileged feminists in the movement. Although several other feminist theorists have made the same criticisms, what sets hooks apart is her invitation to a revolutionary feminist outlook, which uses a pluralistic lens to recognize the absence of oppressed groups and the interrogation of cultural representations. Even (...) before “intersectionality” became a buzzword in feminist circles, hooks has already been talking about the interlocking webs of oppression, a concept that most feminists associate with intersectionality. Despite her novel ideas though, most critics raise concerns about her inconsistencies, lack of methodology, and critical awareness. What I aim to do in this paper is to re-evaluate hooks and propose ways to address some of these supposed contradictions. To enrich hooks’ feminist theory, I propose three main points: the emphasis on the crossing of borders, feminist solidarity and global transgression. (shrink)

Disabled people face obstacles to participation in epistemic communities that would be beneficial for making sense of our experiences and are susceptible to epistemic oppression. Knowledge and skills grounded in disabled people's experiences are treated as unintelligible within an ableist hermeneutic, specifically, the dominant conception of disability as lack. My discussion will focus on a few types of epistemic oppression—willful hermeneutical ignorance, epistemic exploitation, and epistemic imperialism—as they manifest in some bioethicists’ claims about and interactions with disabled people. One of (...) the problems with the epistemic phenomena with which I am concerned is that they direct our skepticism regarding claims and justifications in the wrong direction. When we ought to be asking dominantly situated epistemic agents to justify their knowledge claims, our attention is instead directed toward skepticism regarding the accounts of marginally situated agents who are actually in a better position to know. I conclude by discussing disabled knowers’ responses to epistemic oppression, including articulating the epistemic harm they have undergone as well as ways of creating resistant ways of knowing. (shrink)

The article introduces readers to the study of disability, both with respect to the interdisciplinary field of disability studies and the field of philosophy of disability. We then offer an overview of three central areas of philosophical inquiry where feminist work in philosophy and disability has made significant contributions: (1) metaphysics and ontology, (2) epistemology and phenomenology, and (3) ethical, social, and political philosophy.

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)

How can black feminist and women of color feminist theoretical interventions help create frameworks for discerning agentic action in the context of power, oppression, and violence? In this paper, I explore the social dimension of agency and argue that intention is not just authored by the agent as a function of practical reasoning, but is also socially authored through others' discernment and translation of her action. Further, when facilitated by reasoning designed to reinforce and rationalize systems of domination, social authoring (...) systematically distorts the intentions of some agents. Although some theorists have argued that those agents whose intentions are not recognized by others are forced to exercise a diminished agency, I contend that this account obscures agency that is practiced despite or through conditions of oppression. As an alternative, I propose that feminist of color theory that examines the structural and existential erasures of women of color maps a conceptual space to help us better discern agentic action that is practiced by those subjects whose acts are defined away from them. (shrink)

Disability has been a topic of heightened philosophical interest in the last 30 years. Disability theory has enriched a broad range of sub-specializations in philosophy. The call for papers for this issue welcomed papers addressing questions on normalcy, medical ethics, public health, philosophy of education, aesthetics, philosophy of sport, philosophy of religion, and theories of knowledge. This issue of Essays in Philosophy includes nine essays that approach the philosophy of disability in three distinct ways: The first set of three essays (...) provide a careful analysis of John Rawls, and the application of his work in ethics and justice to societies in which persons with disabilities, especially cognitive disabilities, can take active part in the processes of civil society. The second set of three essays branch out into continental philosophy, and are especially engaged with issues of community membership, communication, translation, and hermeneutics. The third set of three essays address disability specifically through the arts and aesthetics; asking questions on the portrayal of disabled persons in the arts and its implications for normalcy, sexuality, beauty, and the sublime. (shrink)

This thesis draws on poststructuralism/postmodernism to present a feminist investigation into the human body, its modes of (self)identification, and its insertion into systems of bioethics. I argue that, contrary to conventional paradigms, the boundaries not only of the subject, but of the body too, cannot be secured. In exploring and contesting the closure and disembodiment of the ethical subject, I propose instead an incalculable, but nonetheless fully embodied, diversity of provisional subject positions. My aim is to valorise women and situate (...) them within a reconceived ethics which takes account of the embodied feminine. My project entails an analysis and deconstruction of the binaries of those dominant strands of postEnlightenment thought that shape epistemology, ontology, and ethics, which in turn set the parameters of modern bioethics. More importantly, it goes on to reclaim a radical sexual difference beyond the binary, in which the female is no longer the other of the male. My enquiry, then, is strongly influenced by the discursive approach offered by both Foucault and Derrida in differential ways, but I counter their indifference to feminist concerns by qualifying their insights in the light of strategies developed by Irigaray and Spivak, among others. The main method of investigation has been through library research of primary and secondary sources in mainstream and feminist philosophy, and in bioethics. In addition, archival work in both textual and iconographic collections was carried out at the Wellcome Institute for the History of Medicine. The contribution made by this thesis is to go beyond modernist feminisms - which would simply revise and add women into existing paradigms - to radically displace and overflow the mechanisms by which women are devalued. And in developing a postmodern critique around some issues in bioethics, I have suggested a new ethics of the body which precedes the operation of moral codes. (shrink)

Wem wird geglaubt und wem nicht? Wessen Wissen wird weitergegeben und wessen nicht? Wer hat eine Stimme und wer nicht? Theorien der epistemischen Ungerechtigkeit befassen sich mit dem breiten Feld der ungerechten oder unfairen Behandlung, die mit Fragen des Wissens, Verstehens und Kommunizierens zusammenhängen, wie z.B. die Möglichkeit, vom Wissen oder von kommunikativen Praktiken ausgeschlossen zu werden oder zum Schweigen gebracht zu werden, aber auch Kontexte, in denen die Bedeutungen mancher systematisch verzerrt oder falsch gehört und falsch dargestellt werden, in (...) denen manchen misstraut wird oder es an epistemischer Handlungsfähigkeit mangelt. In diesem Buch wird eine Übersicht über die breite Debatte epistemischer Ungerechtigkeit, epistemischer Unterdrückung und epistemischer Gewalt gegeben, in dem unterschiedliche Theorien, die sich auf der Schnittstelle von Gerechtigkeitstheorie und epistemischen Fragen befinden, systematisch und kritisch diskutiert sowie theoretische Vorgänger dieser Theorien beleuchtet werden. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Theory in sociology is constructed as a canon, a very short list of social theorists who have been endowed with suprahistorical status. Drawing on the feminist analysis of gendered consciousness, the author argues that social theory is organized exactly as it should be if one were thinking like a White male capitalist. The perceptual frameworks it employs—a hierarchy of the social, logical dichotomies, decontextualized abstraction, an individualist approach—resonate well with descriptions of hegemonic masculine consciousness. As a result, social theory has (...) not just distorted social perception, it is becoming functionally irrelevant in contemporary social life. The author argues that reasonable understandings are more likely if we are developing via an epistemology of connection, moving from thinking of theory as a holy text to organizing theory to create bridges between diverse standpoints, across disciplinary boundaries, and between knowing and doing. (shrink)

In this paper I take up a critical position in regard to the theme of debility around which this collection is framed. I argue that theorisations of ‘debility’ do little to progress theory and policy in regard to disability and share many of the problems inherent to the social model. I also suggest that the theorisation of debility is rooted in and reinforces ablebodied privilege. I begin with a critical analysis of the social model of disability and explore the dualisms (...) by which it either negates the body altogether or can only conceive the disabled body in negative terms. I then go on to explore how Puar's work on debility continues this negation of the disabled body. From this position I use the work of Inahara to excavate the foundations of ablebodied privilege. In Inahara's work gender is the analytic starting point, but for me white privilege is a much more effective mechanism through which to understand the impact and reproduction of ablebodied privilege— what McRuer refers to as ‘compulsory ablebodiedness'—which I argue underpins Puar's work. I conclude with some reflections upon how a critical analysis of ablebodied privilege might function and I reiterate its importance for a critical theory that goes beyond the mere repetition of binary structures of ablebodiedness and disability. (shrink)

There is increasing research on the inclusion and exclusion of people with disabilities in African spaces, which are perpetuated by religious and cultural fear. Decision to shun or embrace people is defined by the politics of the body and influenced by the religion and culture of fear. In politics of the body, women are discriminated against because their bodies are often controlled and put under surveillance. Women with disabilities experience this discrimination more than their able-bodied counterparts and men with disabilities. (...) Written from the perspective of the ethic of ubuntu, this article examines the fear of disability among the Ndebele of Matetsi in Zimbabwe, as well as how the politics of the body are used by women with disabilities to denounce this fear. These women described how they used and and still use their bodies to call for inclusion in their communities. The article employs findings from the politics of the body emerging from the narratives of women with disabilities to propose an African women’s theology of disability.Contribution: The article problematises fear of disability as a cause of discrimination and exclusion of differently abled people particularly women with. It therefore proposes an African women’s theology of disability that is informed by the interdisciplinary approach of Ubuntu promoting the inclusion of all people including women with disabilities into the web of life. (shrink)

In this project, I argue that the conventional view of personal autonomy that is operational in contemporary American culture, bioethics and medical practice places undue emphasis on individualism and a limited range of personal qualities and attributes (such as self-sufficiency). Instead, I argue in favor of a relational approach to autonomy which recognizes that each person that exists has certain minimal connections or relations to others, and these connections/relations are identity-forming. Unfortunately, current medical practices have tended to overemphasize individuality and (...) choice (consistent with the conventional view) while minimizing or excluding these relational aspects. As a result, informed consent and patient choice have taken the place of a more robust, relational sense of autonomy in these contexts. But this approach fails to appreciate the ways that illness, uncertainty, and suffering may threaten identity and make it more difficult to meaningfully exercise autonomy—especially when construed in such narrow terms. Through an exploration of the nature of suffering and its effects on the person, I argue that to effectively treat ailments and alleviate suffering, patients must be cared for in ways that respect and restore identity, which also promotes autonomy. This kind of respect derives in part from acknowledging and nurturing relationality, especially in medical decision-making contexts. (shrink)

Deep Brain Stimulation is an FDA-approved treatment for the symptoms of Parkinson's disease, essential tremor, dystonia, and epilepsy—with experimental use for mood disorders. DBS systems consist of a signal generator, typically implanted in the user's chest, that sends impulses to electrodes implanted in select areas of the user's brain. These signals change the activity of areas of the brain associated with unwanted symptoms. Several research groups have begun trials to use DBS as a treatment for psychiatric disorders. DBS, however, comes (...) with a... (shrink)

This paper investigates the interaction of gender, disability and education in rural Iran, which is a relatively unexplored field of research. The responses of 10 female students with disabilities from Isfahan indicated that the obstacles they faced included marginalization, difficulties in getting from home to school, difficulties within the school building itself, and discrimination by teachers, classmates and school authorities. The data collected for the study contain a wide range of conservative gendered discourses, and show how traditional gender beliefs interact (...) with disability to aggravate the problems faced in education by young women with disabilities. It is hoped that the findings will raise awareness among policy-makers of the many formidable obstacles that make it difficult for young women with disabilities to achieve their full potential in education. (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 paper argues that discussions of disability must include the same diversity in worldview as is reflected in the client population. Speaking from the perspective of Native American ontology and epistemology, the author argues that those who are considered by the dominant society as disabled might well find themselves subjugated and oppressed by that definition. The differences between a Native American worldview and that of the dominant culture is addressed. The case is made that if diversity in worldview and voice (...) is not honored, disability-based oppression is replicated and reinforced. (shrink)

Justice is a key guiding ethical principle in bioethics. When justice is addressed in bioethics the focus is primarily on the fair distribution of resources, that is, distributive justice. In this thesis, I argue that a distributive conception of justice is unable to adequately address many of the relevant issues of justice within bioethics. These issues are better understood and addressed using a social conception of justice. Social justice is concerned with ensuring that the norms and rules of social structures (...) are fair and equitable. I argue that social and distributive justice are not only compatible, but also complementary. As a result, both conceptions of justice need to be applied to bioethical issues if we are to achieve a truly just outcome. As a case study, I apply this analysis to the controversial issue of the inclusion of pregnant women in clinical research trial. (shrink)

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability has received from philosophers, (...) and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

Assisted suicide is a tragic issue, one of those for which the tools of mere logic are inadequate and in which the power of the individual case is compelling and seductive but not necessarily clarifying. Meaningful dialogue is difficult. Persuasion is limited because the resolution of the issue, on a moral level, must be founded upon fundamental notions of what it means to be human, especially in the midst of suffering or disability or at the point of death.

In a world where technologies often serve to amplify the persistent rendering of disability as an undesired deficit, what we need are empowering utopias concerning bodies, disabilities and assistive technologies. Specifically, I use Barad's article ‘Transmaterialities: Trans*/matter/realities and Queer Political Imaginings’ to illustrate how we might speculate on technologies that understand disabled bodies as affording potentials. The Transreal Tracing Device reimagines our bodies as surfaces of possibility, encouraging explorations into how disabled bodies do and could look like. The speculative device (...) offers an opportunity for positive renegotiations of disabled bodies as malleable and desirable – as ontologically indeterminate and transcendent. In traversing theoretical approaches and using them to design queer-feminist utopias centring disabled people, the concept challenges dominant notions of disabilities and assistive technologies alike. I close by discussing implications for ability-based, participatory but even more so self-determined design, and how to shift the focus of disabled technologies towards potential, from support to appreciation, from isolation to kinship and, ultimately, from shame to pride. (shrink)

Medicalization occurs when an aspect of embodied humanity is scrutinized by the medical industry, claimed as pathological, and subsumed under medical intervention. Numerous critiques of medicalization appear in academic literature, often put forth by bioethicists who use a variety of “lenses” to make their case. Feminist critiques of medicalization raise the concerns of the politically disenfranchised, thus seeking to protect women—particularly natal sex women—from medical exploitation. This article will focus on three feminist critiques of medicalization, which offer an alternative narrative (...) of sickness and health. I will first briefly describe the philosophical origins of medicalization. Then, I will present three feminist critiques of medicalization. Liberal feminism, trans feminism, and crip feminism tend to regard Western medicine with a hermeneutics of suspicion and draw out potential harms of medicalization of reproductive sexuality, gender, and disability, respectively. While neither these branches of feminism—nor their critiques—are homogenous, they provide much-needed commentaries on phallocentric medicine. I will conclude the paper by arguing for the continual need for feminist critiques of medicalization, using uterus transplantation as a relevant case study. (shrink)

I argue that the lived experience of disabled people should be validated instead of a facile categorization. Thus far, a disabled sensibility is reduced to a categorical interpretation. Through my examination of a theoretical performance I illustrate how a disabled/able persona negates a disabled sensibility and allows an audience to experience the exotic disabled without examining their own `ableism'. Sobchack's and Clark's examinations demonstrate how both the techno-body and the cyberbody continue to devalue a disabled embodiment and sensibility. In the (...) final section of the article I explore how Deleuze's concept of `difference in itself' can free disabled people from the concepts of identity, hierarchy, representation and categorization that have been employed to devalue their embodiment and sensibility. Moreover, I believe that Deleuze's alternative theory of `difference in itself' can validate a disabled embodiment and sensibility. (shrink)

While there has been a vast amount of research on breast cancer in recent years, areas within this domain remain unexplored. For instance, there have been few attempts to marry an understanding of the social context in which breast cancer occurs with an understanding of subjective experiences of this condition. The purpose of this study was to explore women's experiences of embodiment after breast cancer, utilizing a phenomenological approach rooted in a feminist perspective. The focus of this article is upon (...) the changes to embodiment that are long‐term. Twelve women were interviewed on two occasions each and were asked to talk about changes to their bodies that occurred as a result of breast cancer. Three key themes were identified: (1) how it feels (e.g. sensation and breast loss); (2) managing appearances (e.g. wearing prostheses); and (3) treatments without end (e.g. menopause). The findings of this study show that women with breast cancer are a diverse group and that survivorship is a dynamic, life‐long process, which suggests that health professionals can play an important role in establishing interdisciplinary approaches to caring, beyond the conclusion of acute treatment. (shrink)

This article aims to deconstruct the concept of dignity in a way that is meaningful, in particular to nurses and other health workers who seek to promote the dignity of children in their care. Despite the emphasis in a variety of codes and policies to promote dignity, there is a lack of a clear definition of dignity in the literature. In particular there is little reference to dignity, theoretically or empirically, as it relates to children. Without clarity it is not (...) possible to act in an ethical way on behalf of children whose dignity could otherwise be compromised. The theoretical position taken has evolved from the medico-nursing and philosophical discourse concerning the nature of human dignity and more recent sociological texts that discuss the social construction of the child and childhood. The article is further influenced by additional insights derived from an ethnographic pilot study at a large district general hospital. This study was undertaken in an attempt to appreciate the subjective experience of dignity by children, and to begin to address the empirical gap in the literature and promote discussion. The concept of a macro and a micro dignity is discussed, together with the role of the nurse in articulating the relationship between the two. The importance of control and witnesses in the experience of dignity is discussed and, finally, also the ethical implications when seeking to promote the dignity of children. (shrink)