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)

The central role of care in human history is beyond questioning [...].

Independence was a core value of the movement for disability rights. People with disabilities did not have to be dependent, advocates claimed; they were robbed of autonomy by poverty, social prejudice, and architectural barriers. Recently, critics have noted that the emphasis on independence equates personhood with autonomy, reason, and self-awareness, thereby excluding those who are incapable of self-determination. The stigma of dependency is communicated to caregivers whose work is devalued and undercompensated. These values are echoed in the life writing of (...) people with disabilities, which tends to present a singular narrative voice, even when the author requires assistance in the physical or intellectual work of composition. The 1979 Mexican memoir-testimonio Gaby Brimmer, collaboratively authored by the acclaimed journalist Elena Poniatowska, Brimmer, her mother, and her paid caregiver is a notable exception. Consisting of interwoven dialogue among its three informants, Gaby Brimmer enacts dependency at the level of form, while exploring the challenges and opportunities of interdependence in societies that devalue the giving and receiving of care. (shrink)

This article uses the work of Eva Feder Kittay and Maurice Merleau-Ponty to advocate for LGBT-inclusive intake questions across aging network services. I argue that care providers need to know their charge's sexual orientation and/or gender identity because caring touch is responsive, meaning that the care provider understands how her touch will be perceived and can change her actions accordingly. Information about a charge's sexual orientation and/or gender identity is one important way to furnish the care provider with the information (...) she needs to calibrate effectively the expressive impact of her touch. (shrink)

I argue that humans have moral relationships with dogs and cats that they could adopt, but do not. The obligations of those of us who refrain from incurring particular relationships with dogs and cats are correlative with the power of persons with what Jean Harvey calls “interactive power,” the power to take the initiative in and direct the course of a relationship. I connect Harvey’s points about interactive power to my application of Eva Kittay’s “dependency critique,” to show that those (...) of us who refrain from incurring particular relationships of dependency rely on caregivers in our communities and regions to fulfill the moral and social demands that an abundance of unowned companionable animals makes on the community. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people with cognitive disabilities are sometimes unable to make (...) important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

This essay explores various philosophical approaches to cognitive disability within feminist philosophy. In doing so, it addresses three broad questions: What positive contributions can feminist philosophy make to the philosophy of cognitive disability? How have feminist philosophers critiqued the presence and absence of cognitive disability in philosophy? And what challenges does cognitive disability pose to feminist philosophy itself? The essay begins with definitions and models of disability and then turns to feminist work on cognitive disability in moral and political philosophy, (...) bioethics, and epistemology. It concludes with some methodological considerations. (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 advances the conception of social entrepreneurs as caring entrepreneurs. We argue that the care ethics of social entrepreneurs, implying the pursuit of caring goals through caring processes, can be challenged when they engage in the process of scaling up their ventures. We propose that social entrepreneurs can sustain their care ethics as the essential dimension of their venture only if they are able to build a caring enterprise. Organizational care designates the set of organizing principles that facilitate the (...) embedding of care ethics at an organizational level, beyond the imprinting induced by social entrepreneurs’ personal ethics. (shrink)

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

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)

Protestant Christian ethicist Timothy Jackson and secular feminist philosopher Eva Feder Kittay each explore the relationship between love or care and justice through the lens of human dependency. Jackson sharply prioritizes agape over justice, whereas Kittay articulates a more complex and integrated understanding of the relationship of care and distributive justice. An account of Christian love and its relation to justice must account for the gratuity, mutuality, and reciprocity that pervade human existence. Such an account must integrate provision for another's (...) basic needs, a feature of agape, with a distributive justice that fairly allocates the material prerequisites of care and the burden of caring labor. Kittay's treatment of care and justice is more adequate to the realities of human embodiment and the social organization of care than Jackson's, but neither offers a fully adequate ground for the moral personhood of all human beings, including deeply dependent persons. (shrink)

In post-Fordist economies, the nature of laboring activities can no longer be subsumed under a Taylorized model of labor, and the service sector now constitutes a larger share of the market. For Maurizio Lazzarato, Michael Hardt, Antonio Negri, and other theorists in the post-Marxist tradition, labor has changed from a commodity-producing activity to one that does not produce a material object. For these authors, this new type of labor is immaterial labor and entails communicative acts as well as added worker (...) agency. This paper reflects on this new paradigm of labor by examining the paid practices of care defined as the activities performed by individuals who have a mandate to help another adult accomplish the tasks of self-care. Because care workers take care of other bodies, care labor exemplifies an embodied practice. I make use of the corporeality of care to put forward the notion of thin and thick embodiment in order to examine critically the meaning of immaterial labor and to support my claim that immaterial labor, as conceptualized by Hardt and Negri, erases both the materiality and relationality of care labor. Furthermore, typifying care labor as immaterial only serves to maintain its marginalized status.Care Assistant. Required to work within a private residential center to assist nursing staff. Experience desirable, qualifications an advantage, but caring and understanding more important than either. Must have good English to understand instructions and be co-operative to work in a friendly team environment (Toynbee 2007, 220). (shrink)

Care is a feature of all of our lives, all of the time. An analysis of Scotland's Curriculum for Excellence reveals that care and caring permeate complex dimensions of life in and after school and we ask here, if, on some accounts, care can do the work required of it. Acknowledging the significance of her contribution to care, we focus on the work of Nel Noddings suggesting that she pays insufficient attention to other emotions implicated in the work of morally (...) appropriate care. We argue here that Noddings' version of care would benefit from the support of an ethical theory of the emotions, including a moralized form of compassion, if care in schools is to be both better understood and more likely realised. (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)

It has been common for researchers and commentators within the discipline of Social and Public Policy to evoke Rawlsian theories of justice. Yet some now argue that the contractualist tradition cannot adequately incorporate, or account for, relations of care, respect and interdependency. Though contractualism has its flaws this article proposes that we should not reject it. Through a critique of one of its most esteemed critics, Martha Nussbaum, it proposes that contractualism can be defended against the capabilities approach she prefers. (...) The article concludes by suggesting how and why the moral philosophy of Thomas Scanlon offers a basis for reconciling the strengths of a contractualist, egalitarian liberalism with those of Nussbaum’s capabilities approach. (shrink)

Philosophers struggle to explain why human beings with deep cognitive impairments have a higher moral status than certain non-human animals. Modal personism promises to solve this problem. It claims that humans who lack the capacities of “personhood” and the potential to develop them nonetheless could have been persons. I argue that modal personism has poor prospects because it's hard to see how we could offer a plausible account of modal personhood. I search for an adequate understanding of modal personhood by (...) considering existing accounts and sketching new ones. But each account fails, either because it objectionably excludes some deeply cognitively impaired humans from the class of modal persons or because it makes modal personhood doubtfully relevant to moral status. And the modal personist cannot solve this problem by appealing to the misfortune suffered by modal persons. (shrink)

New technologies such as smart sensors improve rehabilitation processes and thereby increase older adults’ capabilities to participate in social life, leading to direct physical and mental health benefits. Wearable smart sensors for home use have the additional advantage of monitoring day-to-day activities and thereby identifying rehabilitation progress and needs. However, identifying and selecting rehabilitation priorities is ethically challenging because physicians, therapists, and caregivers may impose their own personal values leading to paternalism. Therefore, we develop a discussion template consisting of a (...) series of adaptable questions for the patient–physician encounter based on the capability approach. The goal is to improve geriatric rehabilitation and thereby increase participation in social life and well-being. To achieve this goal, we first analyzed what is considered important for participation on basis of the capability approach, human rights, and ethics of care. Second, we conducted an ethical analysis of each of the four identified dimensions of participation: political, economic, socio-cultural, and care. To improve compliance with rehabilitation measures, health professionals must align rehabilitation measures in an open dialogue with the patient’s aspiration for participation in each dimension. A discussion template based on the capability approach allows for a proactive approach in patient information and stimulates a critical assessment of treatment alternatives while reducing the risk of imposing personal values. (shrink)

Mass incarceration and the aging prison population in the United States is an ethical crisis, understudied in empirical bioethics research. In this article, I share one woman’s narrative to illustrate how older Black women describe accessing healthcare while incarcerated and identify sites for bioethical exploration. I argue that, due to the punitive nature of prison healthcare interactions, wherein women are seen as inmates first and patients second, healthcare providers are caught in a trap of competing ethical commitments to their patients (...) and the state. As the prison population ages, these challenges will become more acute. Feminist bioethics has a critical role to play in imagining new possibilities for accessing, giving, and receiving care in the carceral context. (shrink)

This paper intends to explain the problem of structural injustice. The Rawlsian theory of justice is problematic due to the reality of positional differences. The assumptions of Rawls are put into question. Oppression, according to Iris Marion Young, is social in character. Fair opportunity is not enough. To elaborate this critique, this study presents the exclusion of individuals with handicap, the problem of global justice, and the situation of women in patriarchal cultures. Some social rules and the behavior of people (...) discriminate the powerless. For instance, particular standards in society promote the high sense of respectability for professionals but not the respect for the equal dignity of persons. Procedures, laws, and policies manifest the prejudice against others. Beyond Rawls, the pursuit of justice and democratic inclusion, it is argued, requires overcoming unjust structures. (shrink)

Care is a feature of all of our lives, all of the time. An analysis of Scotland's Curriculum for Excellence reveals that care and caring permeate complex dimensions of life in and after school and we ask here, if, on some accounts, care can do the work required of it. Acknowledging the significance of her contribution to care, we focus on the work of Nel Noddings suggesting that she pays insufficient attention to other emotions implicated in the work of morally (...) appropriate care. We argue here that Noddings' version of care would benefit from the support of an ethical theory of the emotions, including a moralized form of compassion, if care in schools is to be both better understood and more likely realised. (shrink)

I argue that capabilities approaches are useful in formulating a political theory that takes seriously the needs of persons with severe cognitive disabilities (PSCD). I establish three adequacy criteria for theories of justice that take seriously the needs of PSCD: A) understanding PSCD as oppressed, B) positing a single standard of what is owed to PSCD abled individuals, and C) concern with flourishing as well as political liberty. I claim that conceiving valued capabilities as the end of social distribution may (...) help a political theory to meet these criteria.I posit three further adequacy criteria: D) refusing to see PSCD as less than human, E) valuing moral powers other than practical reason, and F) securing space for care and dependency relationships. I show that how well Elizabeth Anderson and Martha Nussbaum’s capabilities approaches meet these criteria depends on their divergent conceptions of what capabilities are for. I sketch another capabilities approach that might better meet the three latter criteria (inspired by Lawrence Becker and Eva Kittay’s work), that conceives capabilities as for agency and relationship. (shrink)

What does dependency reveal about human learning? All humans are dependent, largely because we are variously vulnerable and disabled at more than one stage in our lives. In this paper the subject of dependency is approached largely in the context of our vulnerable and disabled states, including in particular, states of profound disability. The primary contention is that our dependent states should feature in accounts of how we learn, and of relations between learner and teacher, in ways that compare with (...) the attention given to personal autonomy and independence. (shrink)

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

Historically, philosophers have had little to say about justice and disability. However, in recent years and in response to disability rights movements, philosophers have started to consider the claims to justice of persons with mental and physical impairments. Importantly, some have charged that without extensive revision, social contract accounts of justice – which enjoy immense popularity among political philosophers – cannot address the needs and interests of persons with disabilities. In this article, I explain why social contract accounts are thought (...) to flounder when it comes to justice for persons with disabilities. Then I assess the merits of recent attempts to construct theories of justice inclusive of persons with disabilities. In particular, I consider Nussbaum’s capabilities approach, Kittay’s justice as caring, and various restatements of the social contract. (shrink)

The goal of inclusion is more or less credible depending in part on what it is that learners have in common. I discuss one characteristic that all learners are thought to share, although the learners I am concerned with represent an awkward case for the aspiration of inclusivity. Respect is thought of as something owed to all persons, and I defend the view that this includes persons with profound and multiple learning difficulties and disabilities. I also consider the implications of (...) respecting profoundly disabled learners for teaching and learning, and three aspects in particular: treating the profoundly disabled learner as a person; the close relationship between teaching and caring for a vulnerable learner; and individualised learning as an element of a successful teaching and learning environment. (shrink)

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that (...) moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)