Douglas Biklen, Dean, School of Education, Syracuse University; Professor, Disability Studies; Director, Facilitated Communication Institute, Syracuse University, Presuming Competence: Why "Mental Retardation" is an Unhelpful Idea
ABSTRACT: This presentation examines the metaphorical nature of the concept of mental retardation, examining its roots in psychological testing and its reification through everyday beliefs as well as influential social policies. It explores meanings attributed to particular human actions and/or appearance that either sustain or resist the idea of mental retardation and then asks a simple question: when apologists for the concept of mental retardation report on the meaning of performance, are these observations valid? That is, are observers seeing what they think they are seeing? The presentation challenges the concept of "breaking through," as well as the ubiquitous requirement imposed upon those labeled retarded that they must individually, alone, prove themselves competent. Instead, drawing on documentary films (e.g., Autism Is A World , Inside the Edge , and My Classic Life as an Artist ) and autobiographical accounts of people classified as cognitively disabled, the presentation suggests the alternative frame of presuming competence and illustrates its potential importance for educators and the broader society.
Beginning in the mid-20th century, the US government embarked on an unprecedented drive to "combat mental retardation." Billions of dollars have been invested in research, training, and infrastructure to prevent cognitive disabilities, and the search for medical interventions continues with expanded newborn screening and gene therapy. The leaders of this movement believed that they would reduce the prevalence of cognitive disability by 50% by 2000. Did they succeed? The answer to this seemingly simple question begins with a review of the historical epidemiology of cognitive disabilities: how did the application of medical science in the US affect the number of people with a cognitive disability. Such a narrow approach, however, leads quickly to on-going debates regarding the definition of cognitive disability, and suggest how social and political forces influence the very content of science and medicine. This investigation of historical epidemiology also reveals the critical role of public health and social policy in cognitive development, and suggests the limits of the 20th century focus on the medical model.
ABSTRACT: Philosophers have addressed intellectual disability in many different ways. In some cases, the "intellectually disabled" are direct objects of philosophical inquiry that centers upon a variety of ethical and bioethical questions regarding their moral status, personhood, and treatment. Yet the "intellectually disabled" are also addressed indirectly, appearing as an excluded group, a passing thought experiment, or serving simply to bolster the case for another group of individuals (e.g. non-human animals.) In this paper, I engage in a reversal of sorts, whereby the philosopher becomes the object of study rather than the "intellectually disabled." In asking "Who is the philosopher of intellectual disability?" I raise critical questions regarding the multiple positions that philosophers can and do occupy in relation to intellectual disability. To do so, I will draw from both historical and contemporary figures that can be found in the concrete world of intellectual disability: the institutional expert, the genetic counselor, the parent/family member, the non-human animal, and the "intellectually disabled" themselves. What parallels can be drawn between these figures and the philosopher of intellectual disability? What can these figures reveal to us about our own philosophical projects regarding intellectual disability? Ultimately, I will argue that philosophers of intellectual disability should consider the history, complexity, and contingency of intellectual disability as a classification, and take seriously questions of epistemic authority and power relations when making claims about "the intellectually disabled."
Leslie Francis, Professor and Chair of the Philosophy Department, Alfred C. Emery Professor of Law, University of Utah, & Anita Silvers, Professor of Philosophy, San Francisco State University. Rethinking “Conceptions of the Good” in Light of Intellectual Disabilities
ABSTRACT: This essay extends our previous work on justice through trust, a revisioning of liberal theory to make good on its promise of inclusiveness. Here we explore metaphysical presuppositions of recent liberal theorizing that attenuate or deny the moral and political considerability of individuals with cognitive disabilities. Liberalism, while broadly welcoming of diverse ideas of the good, often imposes a process for developing those ideas that appears prohibitive to participation by people with cognitive disabilities, for it supposes that they must develop their ideas of the good independently. Within the context of partial compliance theorizing about justice, we develop an account of how people with cognitive disabilities can achieve important powers associated with independent thinking about the good for themselves. They need not be articulate to do so, nor must the exercise of the powers be discursive. We also argue, briefly, against attempting to derive the considerability of people with cognitive disabilities from metaphysical premises about personhood. Instead, we recommend a prosthetic assistive thinking process, enacted through a practice of trust, that reveals and incrementally empowers the personhood of cognitively disabled subjects.
Ian Hacking, Professor Emeritus, Collège de France (Chaire de philosophie et histoire des concepts scientifiques) and University Professor Emeritus, University of Toronto. How We Have Been Learning to Talk About Autism
ABSTRACT: How autism feels like from the inside: we read such words over and over again, on the dust jackets of autobiographies by autistic people. We have the picture of an "inside" there, about which there are facts to find out, and which these authors try to describe truly. A better image is of gifted individuals on the autistic spectrum creating the language that we shall use to understand autists and to enlarge their role in the human community. Insights derived jointly from Wittgenstein and Wolfgang Köhler (pioneer of Gestalt psychology) will be used to explain why there is a need for linguistic innovation. The new multimedia genre of autistic narrative–autobiography, parental biography, fictions, stories for children, and above all blogs, is an essential part of transforming the conception that severely autistic people lead "thin" emotional lives into a vision of a far richer mode of existence.
James C. Harris, M.D., Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine. A Developmental Perspective on the Emergence of Moral Personhood
ABSTRACT: The status, rights, and roles of people with intellectual and development disabilities (IDD) have been debated since antiquity. Theirs is a long history ranging from compassionate concern for their welfare to ostracism, stigma, sterilization, and involuntary euthanasia. They have joined life saving research projects and been involved in research abuses. The earliest classifications focused on racial regression (mongolism) but later ones have successively sought to reduce stigma. The evolutionary view that delineates the inter relatedness of all living beings may be utilized to understand their development. The neurobiology of affective attunement, social attachment and interpersonal bonding provides a framework to understand how they become persons in a social context. Models of moral development that focus on the emergence of empathy and mercy are better suited to understand their moral standing than those that focus on the emergence of rational thought and justice. Individual autonomy and self-determination varies depending on cognitive capacity that ranges mild to profound levels of intellectual disability. Although the extent of habilitation possible depends on cognitive capacity, when supports are tailored to individual needs, normalization and participation in community life is considerable. A developmental approach clarifies that if the focus is placed on helping each person function at their capacity, the term "retardation" is meaningless. Because disability is a social construct the extent that a person is disabled is constrained only by the availability of supports. An approach to providing supports, including spiritual support, is detailed in the extended AAIDD multidimensional classification. This presentation will discuss each of these issues in the context of moral personhood and conclude with a review of behavioral phenotypes in intellectual disability syndromes and how medical research, after the Belmont report on protection of human subjects, has emphasized the ethical principles of autonomy, beneficence, and justice in the conduct of research involving people with intellectual and developmental disabilities.
Bruce Jennings, Department of Epidemiology and Public Health, Yale School of Medicine. Agency and Moral Relationship in Dementia
ABSTRACT: This paper examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer Disease and other forms of chronic, progressive dementia. The paper develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on an hedonic legal standard of “best interests.” As an alternative, the paper develops a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.” The paper is motivated, in part, by a desire to counter philosophical views which deny both agency and personhood to individuals with AD on definitional or analytic conceptual grounds. Semantic agency refers to the capacity to communicate, to engage in meaning sending and receiving (i.e. transactional) relationships with others, and to evince understanding and evaluation of such communication. I argue on hermeneutic and clinical grounds that this capacity persists in properly structured, supportive care-giving environments even when high level cognitive, speech, executive, and short-term memory functioning have been impaired. Memorial personhood refers to the status of the demented individual within the moral life world of semantic agents and those engaged in the form of moral agency constituted by the giving of care. This particular type and status of personhood is not often recognized as such. It does not derive from the capacities of the individual, even from the capacity for semantic agency. It derives instead from three components of the individual’s ontological situation: need, vulnerability, and the duty called forth by remembered identity. To be a memorial person is to be a self in the imagination and memory of others; which, as Mead argued, is just what it is to be a self. It is to be a self whose identity and life must be honored and acknowledged by those who can, even if it no longer can be by the person himself or herself. And to be a person of any type—including a memorial person—is to be a self to whom "attention must be paid." Memorial personhood underscores the neglected place of memory in moral theory and practice; it reaffirms, even in the face of disability and impairment, the continuing recognition of individuals living with dementia as members of a human moral community, a community of constant re-naming and re-membering. On the basis of these conceptions, the paper argues that both caregivers and social institutions (including public policy for long-term care) have an obligation to provide the environment, resources, services, and human presence necessary to sustain and conserve semantic agency and (memorial) personhood during the course of life with dementia. The paper aims to make both a practical contribution to long-term care clinical and policy ethics and to explore significant aspects of ethical theory in the face of cognitive impairment.
Hilde Lindemann, Professor of Philosophy, Michigan State University. Holding One Another (Well, Wrongly, Clumsily) in a Time of Dementia
ABSTRACT: In this paper I take a close look at a species of care that is particularly needed by people with progressive dementias but that has not been much discussed in the bioethics literature: the activity of holding the person in her or his identity. I press the claim that close family members have a special responsibility to hold on to the demented person’s identity for her and I offer some criteria for doing this morally well or badly. Finally, I consider clumsy holding, and suggest that it too can have great moral worth.
ABSTRACT: I will examine the status of human beings whose psychological capacities and potential are no higher than those of certain nonhuman animals. The first issue is whether these human beings, to whom I refer as the “radically cognitively limited,” are disabled, which is related to the question whether their congenital cognitive limitations are a misfortune. If these human beings are deemed to be disabled and if it is held to be a misfortune to be congenitally endowed with their psychological capacities and potential, then we need an explanation of the common view that animals with comparable psychological capacities and potential are neither disabled nor unfortunate. One explanation appeals to the idea that how well or badly off an individual is depends on how that individual is faring relative to the norms for its biological species. But I argue that this view is indefensible. In the final part of the presentation, I will explore the implications of the assumption that the radically cognitively limited have the same moral status that persons with normal cognitive capacities have. In particular, I consider the problems of assuming that they come within the scope of common principles of equality and priority.
ABSTRACT: Some of the most interesting philosophical work done on Alzheimer's Disease—I refer in particular to well-known discussions by Dworkin, Dresser, and Jawarska—has considered how the impact of the disease on the minds of afflicted people is related to the nature, and appropriate exercise, of proxy decision-making authority. Without explicitly drawing on it in their arguments, these thinkers seems to share a general picture of the mind that is roughly "internalist"—that is, in which mental contents, including one's desires, interests, and values, are taken to be individuated solely by features of the content bearer's neural properties. In this paper, I argue that alternative, "externalist" pictures of the mind, of the sort sketched out in papers by Naomi Scheman and Andy Clark and David Chalmers, are relevant to assessing the disagreements about critical interests and experiential interests, value and desire, that feature in the decision-making debates. I consider as well whether the externalist picture accommodates, should alter, or should be altered by, reports of the experience of undergoing Alzheimer's Disease.
ABSTRACT: Continuing the analysis of disability begun in Frontiers of Justice, I ask what equal respect for people with cognitive disabilities as citizens require. I argue that the area of the capabilities approach that is in general the most controversialin the American context—its strong emphasis on social and economic entitlements—is the easiest and simplest to apply to the case of cognitive disability. Education is somewhat more complicated and controversial, since inclusion of people with cognitive disabilities on a basis of equality requires policies that are very expensive. Here, however, law has forged ahead; the analysis I recommend is already not just statutory law, but is also supported by constitutional law, which used the idea of equal protection to compel a remedy like IDEA, and which has recently interpreted IDEA in an expansive and generous light. The surprising results will come in the area that usually looks so simple that we take it for granted: the area of political and civil liberties. For I shall argue that showing equal respect for the dignity of citizens with cognitive disabilities requires giving them an equal right to vote, to serve on juries, and so forth—just as it entails that equal entitlement for everyone else. I explain what that means.
David Shoemaker, Associate Professor of Philosophy, Bowling Green State University. Responsibility, Agency, and Cognitive Disability
ABSTRACT: "Moral community" is a term of art in philosophy, but it’s often taken to refer to the collection of moral agents, that is, those agents eligible for assessments of moral responsibility. Discovering the boundaries of the moral community—as well as the conditions for membership in it—has thus typically involved two steps: (a) identifying the ways in which paradigm members like you and me are in fact assessed as responsible, and (b) identifying the conditions distinguishing such members from paradigm examples of agents exempted from assessments of responsibility. But of course all we may learn from this exercise is what makes you and I paradigm members of the moral community and what makes the exempted agents paradigm non-members. We may thus learn less about the actual boundaries of the moral community—and thus the necessary conditions for entry into it—than we learn simply about the sufficient conditions for full-fledged membership or non-membership. This is why I believe we can actually learn more about the nature of those boundaries and the conditions for entry by considering contrasts between those who are just outside the community and those who are just inside it. This is what I intend to do in this paper, and I will proceed by contrasting mild mental retardation with psychopathy, specifically among adults. For those who work with and know them, adults with mild mental retardation are thought to be obvious members of the moral community, albeit not full-fledged members. And for those who work with and know adult psychopaths, they are not thought to be members of the moral community, albeit not in such a clear-cut fashion as the insane or very young children, say. Why is this? To answer this question, I will discuss relevant aspects of both mild retardation and psychopathy, and then complicate matters with a puzzle about criminal responsibility.
Peter Singer, Ira W. DeCamp Professor of Bioethics, University Center for Human Values, Princeton University. Speciesism and Moral Status
ABSTRACT: According to a widely shared moral view, human beings have a moral status that is superior to that of nonhuman animals. How is this difference in moral status to be defended? The most plausible defense refers to the superior cognitive capacities of human beings. Severe cognitive disability poses a problem for this defense, because it is undeniable that some nonhuman animals have cognitive capacities that are superior to those of some severely or profoundly cognitively disabled humans. I will argue that we should reject the widely shared moral view referred to above. I will then examine the implications of this rejection, both for our views about animals, and for our views about another widely shared moral view, that all human beings have equal moral status and that their lives are of equal value.
Martha Nussbaum rejects social contract theories of justice in favor of the capabilities approach partly on the ground that contract views are bound to demote the justice claims of the severely cognitively impaired. Her approach shares with the contract view the notion that humans have inherent worth and the idea that the capacity for practical reason has great value. These ideas are at the basis of the liberal requirement that political authority be justifiable to all who will be subjected to it. The idea is that beings capable of acting for reasons must be given reasons for complying with the dictates of political authority or else those individuals are subjugated by that authority. This subjugation counts as a violation of their worth. Typically, the requirement of justifiability to all is satisfied by the contract device. That device tells us what sort of political arrangements idealized agents would choose under idealized conditions and so tells us what arrangements actual individuals have reason to accept. I argue that in eliminating the social contract, Nussbaum’s approach to justice fails to meet the requirement of justifiability to all that is mandated by her own conception of the worth of human beings. Consequently we should look for another way to ensure the inclusion of the severely cognitively impaired under the umbrella of liberal justice.
Anna Stubblefield, Associate Professor of Philosophy; Affiliate, Afro-American Studies Department and American Studies, Rutgers University, Newark. The Entanglement of Race and Cognitive Disability
ABSTRACT: Americans with developmental disabilities who are not white receive significantly lower quality educational and health care service and adult living support than do white people with developmental disabilities. This "double dose" of oppression is not coincidental, however. It results from the intertwined development of the conception of race and the conception of intelligence in the United States, a legacy that we must confront in order to achieve a just society.
Daniel Wikler, Mary B. Saltonstall Professor of Ethics and Population Health, Department of Population and International Health, Harvard School of Public Health, Paternalism and Reducing Cognitive Capacity
People who lack sufficient cognitive capacity to manage their affairs can be declared incompetent. Control is transferred to others who must act in their interests. If this arrangement works well, they are protected from the ruin that might befall them had they remained at liberty to make fateful decisions without the cognitive resources that the specified tasks require. These practices are familiar and widely accepted. The moral rationale that legitimates them rests on some assumptions that seem plausible but that are not easily articulated or defended. Of particular notion are the concept sof incompetence and competence (for a given task). They admits of two distinct interpretations: (1) absolute: capacity for performance that falls below a specified threshold, and (2) relative: capacity for performance that is much inferior to that of others, including prospective guardians. A examination of structure of the moral rationale for transferring control over personal affairs from cognitively-impaired people to designated guardians reveals that the determination of the applicable threshold of competent performance derives from considerations not only of paternalism but also of distributive justice.
Jonathan Wolff, Professor and Department Chair, University College London, Philosophy. Cognitive Disability in A Society of Equals
ABSTRACT: This paper considers the range of possible policy options that are available if we wish to treat people with cognitive disabilities as equal members of society. It is suggested that the goal of policy should be allow each disabled person to establish a worthwhile place in the world and sets out four policy options: cash compensation, personal enhancement, status enhancement and targeted resource enhancement. The paper argues for the social policy of targeted resource enhancement for individuals with cognitive disabilities, in the form of providing cash with some limits on its use. Taking the example from the UK of ‘self-directed services’ it is argued that such policies can be cost-effective and advance the autonomy of people with cognitive disabilities, especially when compared with current policies of centrally provided services.
Sophia Wong, Assistant Professor of Philosophy, Long Island University. Duties of Justice to Citizens with Cognitive Disabilities
ABSTRACT: A theory of justice specifies minimal duties of justice to citizens. Do we have different (or lesser) duties of justice to citizens whenever they are labeled with cognitive disabilities? Martha Nussbaum claims that the needs of the cognitively disabled do not raise for Rawls issues of justice but are rather duties of charity. I argue that Rawls's account of moral development implies that structuring society so that it excludes some citizens from the community (at birth or in early childhood) is to deny them the opportunity to develop the two moral powers and hence to become fully cooperating members of society. Furthermore, when certain citizens lack access to appropriate communication technologies and interaction with other people, their right to freedom of expression is not upheld. On my interpretation of Rawls's theory, 1) all citizens should be regarded as having the potential for the two moral powers, and therefore as moral persons; 2) individuals need the Enabling Conditions in order to develop and exercise the two moral powers; and hence 3) we do have one specific duty of justice to citizens labeled with cognitive disabilities: to provide them with the Enabling Conditions until they become moral persons.