This third edition of the bestselling An Introduction to Sociology: Feminist Perspectives confirms the ongoing centrality of feminist perspectives and research to the sociological enterprise and introduces students to the wide range of feminist contributions to key areas of sociological concern. This completely revised edition includes: · new chapters on sexuality and the media · additional material on race and ethnicity, disability and the body · many new international and comparative examples · the influence of theories of globalization and post-colonial (...) studies. The theoretical elements have also been fully rethought in light of recent developments in social theory. Written by three experienced academics, this book gives students of sociology and women's studies an accessible overview of the feminist contribution to all the key areas of sociological concern. (shrink)

This article accepts the proposition that old people want to be treated with dignity and that statements about dignity point to ethical duties that, if not independent of rights, at least enhance rights in ethically important ways. In contexts of policy and law, dignity can certainly have a substantive as well as rhetorical function. However, the article questions whether the concept of dignity can provide practical guidance for choosing among alternative approaches to the care of old people. The article explores (...) the paradoxical relationship between the apparent lack of specific content in many conceptions of dignity and the broad utility that dignity appears to have as a concept expressive of shared social understandings about the status of old people. (shrink)

We describe how a Community-Based Participatory Research (CBPR) process was used to develop a means of discussing end-of-life care needs of Deaf seniors. This process identified a variety of communication issues to be addressed in working with this special population. We overview the unique linguistic and cultural characteristics of this community and their implications for working with Deaf individuals to provide information for making informed decisions about end-of-life care, including completion of health care directives. Our research and our work with (...) members of the Deaf community strongly show that communication and presentation of information should be in American Sign Language, the language of Deaf citizens. (shrink)

Feminist approaches to bioethics have the striking ability to usefully disrupt conversations otherwise in danger of calcifying into immovable opposing camps. Take, for instance, debates between theorists in disability studies and bioethicists who often take two different approaches to understanding disability. On one side are those such as Buchanan, Brock, Daniels, and Wikler (2000) who seek to locate the apparent functional deficiency of disability in biologically abnormal bodies. Let us call this a normal functioning approach to understanding disability. On the (...) other side are those such as Amundson (2000a; 2005) who argue that to be paraplegic or deaf is not to be inherently deficient but different in .. (shrink)

This article provides a personal viewpoint on and outline of the author's contribution to learning disability in India. It refers to her doctoral research on policy and the status of people with disability in India. It puts forth the view that although India addresses diversity in many ways it tends to exclude people with disability from national programmes. It argues that inclusive education should be context- and culture-specific and that inclusive programmes can develop, albeit incrementally, despite the fact that systemic (...) change has not taken place. The article ends with the suggestion that moral and ethical considerations demand that people engaged with inclusion need to work towards inclusion of all children wherever necessary and that each individual first of all needs to internalise the change within themselves. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)

Tensions exist between the disability rights movement and the work of many bioethicists. These reveal themselves in a major recent book on bioethics and genetics, From Chance to Choice: Genetics and Justice. This book defends certain genetic policies against criticisms from disability rights advocates, in part by arguing that it is possible to accept both the genetic policies and the rights of people with impairments. However, a close reading of the book reveals a series of direct moral criticisms of the (...) disability rights movement. The criticisms go beyond a defense of genetic policies from the criticisms of disability rights advocates. The disability rights movement is said not to have the same moral legitimacy as other civil rights movements, such as those for women or "racial" minorities. This paper documents, and in some cases shows the flaws within, these challenges to the disability rights movement. (shrink)

I review the main models of disability and introduce a line of reasoning that has been neglected in the debate concerning disability and disadvantage. My reasoning suggests that while disablism can and should be combated, success will require more challenging transformations than those featured in the literature.

To the Editor: In the November–December 2010 issue, the Seattle Growth Attenuation and Ethics Working Group (“Navigating Growth Attenuation in Children with Profound Disabilities”) analyzed the arguments for and against growth attenuation in children with permanent, profound intellectual disabilities and identified conditions under which its use may be ethically acceptable. The working group’s conclusion is based on a particular construction of the issue that is not always justified. It focuses on the possibility that growth attenuation will increase children’s involvement in (...) family social and recreational activities. The critique of the biomedical model of disability, however, highlights the potential gap between .. (shrink)

The Dutch rules governing neonatal euthanasia, known as the Groningen Protocol, require parental consent for severely disabled infants with poor prognoses to have their lives terminated. This paper questions whether parental consent should be dispositive in such cases, and argues that the potential suffering of the neonate or pediatric patient should be the decisive factor under such unfortunate circumstances.

Termination of pregnancy (TOP) is offered in many countries, for foetuses prenatally diagnosed with congenital malformations that are deemed incompatible with life or that are associated with a high morbidity. In Lebanon, a middle income country where religion plays a focal role, the law prohibits any form of TOP unless it is the only means to save the mother's life. It is the contention of the authors of this article that even if the foetus is a person, if it were (...) medically revealed that there is a substantial risk that the newborn will suffer severe physical abnormalities that will cause it to be seriously handicapped; it is morally acceptable to terminate the pregnancy. Hence, TOP carried out for these indications is justified in the interest of the foetus and the child. Whatever the status of the foetus is, once born, it will become a full-fledged sentient being with all that this entails. When given the option of starting an existence, this person-to-be has the right to a minimum that allows him/her to enjoy a relatively good quality of life. Today, Lebanese obstetricians are confronted with the burden placed on them under the law to refuse TOP, or, when performing them, to forge records or deny having done them. This is why we strongly believe that the Lebanese policy on abortion should be amended. (shrink)

Richard J. Arneson version 7/27/99 Is having a disability more like being a member of a racially stigmatized group or like lacking a talent? Both analogies might be apt. The Americans with Disabilities Act stresses the former analogy. The framing thought is that people with disabilities are objects of prejudice and prejudiced behaviors which wrongfully exclude them from participation in important social practices such as the labor market. Think for example of a blind person whose job applications are always automatically (...) rejected because she is blind and without any consideration of her aptitude for this or that specific job. Such a person suffers wrongful discrimination and is denied equality of opportunity. (shrink)

Recently in the U.S. a near-consensus has formed around the idea that it would be desirable to "end welfare as we know it," in the words of President Bill Clinton.1 In this context, the term "welfare" does not refer to the entire panoply of welfare state provision including government sponsored old age pensions, government provided medical care for the elderly, unemployment benefits for workers who have lost their jobs without being fired for cause, or aid to the disabled. "Welfare" in (...) contemporary debates means "cash, food, or housing assistance to healthy nonaged persons with low incomes."2 In the U.S., the main policy that qualifies as welfare in this sense is Aid to Families with Dependent Children.3 Although contemporary attacks on welfare are identified with conservative policy analysts such as Charles Murray, in fact dissatisfaction with the policies Murray targets for criticism is widespread among liberal intellectuals. For example, in a sharply critical review essay on Murray's book Losing Ground, Christopher Jencks worries that "the social policies that prevailed from 1964 to 1980 often seemed to reward vice" instead of rewarding virtuous conduct by the poor. The problem as Jencks, following Murray, views it is not easy to repair, because "if you set out to help people who are in trouble, you almost always find that most of them are to some extent responsible for their present troubles. Few victims are completely innocent. Helping those who are not doing their best to help themselves poses extraordinarily difficult moral and political problems."4 David T. Ellwood writes that Murray “is almost certainly correct in stating that welfare does not reflect or reinforce our most basic values. He is also correct in stating that no amount of tinkering with benefit levels or work rules will change that.”. (shrink)

Abstract There is no scientific evidence that the sociomoral reasoning or behaviour of deaf children is different from that of their hearing peers. In spite of this Markoulis and Christoforou (1991) advocate, at the end of their study of congenitally deaf children, the need for ?restructuring the children's interaction and activities in order to provide developmentally appropriate opportunities for sociomoral development?. The literature on the development of the conscience and sociomoral reasoning of deaf school children and adults is reviewed. The (...) conclusion is that there are no data that show the deaf to be different from their hearing peers, although some writers have made such unsupported claims. (shrink)

In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support (...) the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions. (shrink)

Parent?teacher relations are often characterized as highly conflictual in the educational literature, with scant empirical evidence of how the disagreements occur in everyday talk. Close analysis of a teacher's account of an intense conflict with a student's mother over the National Honor Society grounds the abstract discourses of merit and difference in the worlds of parents, teachers and students. Narrating primarily through reported speech, in a ?she said, I said? fashion, the teacher recreates her conversations about the National Honor Society (...) and the graduation ceremony. Creating the social milieu through reported speech and the inner reality by telling what she left unspoken, she captures the derision between parents and teachers. Moreover, the adult struggles obscure the adolescents' initial concerns about elitism. Exposed to reform debates, the teacher reveals her consciousness about diversity and privilege. The mother's understanding reflects traditions of individualism and meritocracy without regard to barriers created by race, sex, class and disability. The encounter ends without opportunity for fuller articulation. Notwithstanding these tendencies, the individual parent?teacher conference remains the most widely employed format in US schools, emblematic of an extremely privatized notion of that relationship. The author frames the conflict in terms of school community and public education at large to identify possibilities for more generative communication. (shrink)

A number of cognitive and behavioral variables influence the performance in tasks of theory of mind (ToM). Since two of the most important variables, memory and explicit expression, are impaired in schizophrenic patients, the ToM appears inconsistent in these patients. An ideal instrument of ToM should therefore account for deficient memory and impaired ability of these patients to explicitly express intentions. If such an instrument is developed, it should provide information that can be used not only to understand the pathophysiology (...) but also to monitor patients. (shrink)

Behavior analysis, a rapidly growing profession, began with the use and application of conditioning and learning techniques to modify the behavior of children or adults presenting severe management problems, often because of developmental disabilities. Now behavior analysts work in a variety of settings, from clinics and schools to workplaces. Especially since their practice often involves aversive stimuli or punishment, they confront many special ethical challenges. Recently, the Behavior Analysis Certification Board codified a set of ten fundamental ethical guidelines to be (...) followed by all behavior analysts and understood by all students and trainees seeking certification. This book shows readers how to follow the BACB guidelines in action. The authors first describe core ethical principles and then explain each guideline in detail, in easily comprehensible, everyday language. The text is richly illuminated by more than a hundred vivid case scenarios about which the authors pose, and later answer questions for readers. Useful appendices include the BACB Guidelines, an index to them, practice scenarios, and suggested further reading. Practitioners, instructors, supervisors, students, and trainees alike will welcome this invaluable new aid to professional development. (shrink)

Contributors explore the social, medical, and ethical dilemma of assisted suicide in this revised edition that includes international as well as domestic viewpoints. The federal government's continued challenges to Oregon's Death with Dignity Act, the disabled community's response to assisted suicide, and the slippery slope argument are all examined.

Recent political philosophers have argued that criteria of social justice that defend distributing resources to individuals on the basis of the disadvantages of their natural endowments are disrespectful and disparaging. Clearly influenced by the social model of disability, Elizabeth Anderson and Thomas Pogge have recently defended criteria of social justice that distribute resources to people with disabilities on the basis of eliminating discrimination, not making up for so-called natural disadvantage. I argue that it is implausible to suggest that just entitlements (...) for people with disability can be secured solely by eliminating discrimination. Resources for people with disabilities must sometimes be justified on the grounds that some natural endowments pose disadvantages even in societies that do not discriminate. I argue further that there need be nothing at all disrespectful about this way of explaining disadvantage; nor have proponents of the social model of disability or political philosophers provided any compelling reasons for supposing that it is disrespectful. There is thus no motivation for Anderson's and Pogge's attempts to secure justice for people with disabilities by appealing solely to the imperative to eliminate discrimination. (shrink)

Extant business research has not addressed the ethical treatment of individuals with psychiatric disabilities. This article will describe previous research on individuals with psychiatric disabilities drawn from rehabilitation, psychological, managerial, legal, as well as related business ethics writings before presenting a framework that illustrates the dynamics of (un)ethical behavior in relation to the employment of such individuals. Individuals with psychiatric disabilities often evoke negative reactions from those in their environment. Lastly, we provide recommendations for how employees and organizations can become (...) more proactive in providing individuals with such disabilities equal employment opportunities for both access and accommodation in the workplace. (shrink)

abstract In this paper I develop a characterization of disability according to which disability is in no way a sub-optimal feature. I argue, however, that this conception of disability is compatible with the idea that having a disability is, at least in a restricted sense, a harm. I then go on to argue that construing disability in this way avoids many of the common objections levelled at accounts which claim that disability is not a negative feature.

Unilateral neglect stems from a relatively selective impairment of exogenous, or stimulus-related, orienting of attention. This neuropsychological evidence parallels “change blindness” experiments, in which normal individuals lack awareness of salient details in the visual scene as a consequence of their attention being exogenously attracted by a competing event, suggesting that visual consciousness requires the integrity of exogenous orienting of attention.

Education, Religion and Society celebrates the career of Professor John Hull of the University of Birmingham, UK, the internationally renowned religious educationist who has also achieved worldwide fame for his brilliant writings on his experience, mid-career, of total blindness. In his outstanding career he has been a leading figure in the transformation of religious education in English and Welsh state schools from Christian instruction to multi-faith religious education and was the co-founder of the International Seminar on Religious Education and values. (...) John Hull has also made major contributions to the theology of disability and the theological critique of the "money culture." This volume brings together leading international scholars to honour John Hull's contribution, with a focus on furthering scholarship in the areas where he has been active as a thinker. The book offers a critical appreciation of his contribution to religious education and practical theology, and goes on to explore the continuing debate about the role of religious education in promoting international understanding, intercultural education and human rights education. A possible basis for integrating Islamic education into Western education is suggested and the contribution of the philosophy of religion to pluralistic religious education is outlined. The contributors also deal with issues relating to indoctrination, racism and relationship in Christian religious aspects, and examines aspects of the the theology of social exclusion and disability. (shrink)

To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these patients (...) are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. (shrink)

Based on recent insight into the thalamocortical system and its role in perception and conscious experience, a unified pathophysiological framework for hallucinations in neurological and psychiatric conditions is proposed, which integrates previously unrelated neurobiological and psychological findings. Gamma-frequency rhythms of discharge activity from thalamic and cortical neurons are facilitated by cholinergic arousal and resonate in networks of thalamocortical circuits, thereby transiently forming assemblies of coherent gamma oscillations under constraints of afferent sensory input and prefrontal attentional mechanisms. If perception is based (...) on synchronisation of intrinsic gamma activity in the thalamocortical system, then sensory input to specific thalamic nuclei may merely play a constraining role. Hallucinations can be regarded as underconstrained perceptions that arise when the impact of sensory input on activation of thalamocortical circuits and synchronisation of thalamocortical gamma activity is reduced. In conditions that are accompanied by hallucinations, factors such as cortical hyperexcitability, cortical attentional mechanisms, hyperarousal, increased noise in specific thalamic nuclei, and random sensory input to specific thalamic nuclei may, to a varying degree, contribute to underconstrained activation of thalamocortical circuits. The reticular thalamic nucleus plays an important role in suppressing random activity of relay cells in specific thalamic nuclei, and its dysfunction may be implicated in the biological vulnerability to hallucinations in schizophrenia. Combined with general activation during cholinergic arousal, this leads to excessive disinhibition in specific thalamic nuclei, which may allow cortical attentional mechanisms to recruit thalamic relay cells into resonant assemblies of gamma oscillations, regardless of their actual sensory input, thereby producing an underconstrained perceptual experience. Key Words: Charles Bonnet syndrome; gamma oscillations; hallucinations; late paraphrenia; Lewy body dementia; perception; schizophrenia; thalamocortical system. (shrink)

Affect mirroring allows infants to distinguish emotional and intentional states of significant others, which – in the pursuit of their own drive satisfaction, including satisfaction of the affiliative drive – become important contextual stimuli predictive of reward. Learning to perceive and manipulate others' attitudes toward oneself in pursuit of affiliative reward may be an important step in social development that is impaired in autism.

A “multifactorial” model should accommodate a psychological perspective, aiming to relate the phenomenology of complex visual hallucinations not only to neurobiological findings but also an understanding of the patient's psychological problems and situation in life. Greater attention needs to be paid to the role of the “lack of insight” patients may have into their hallucinations and its relationship to cognitive impairment.

In his paper, “The Relevance of Rawls’ Principle of Justice for Research on Cognitively Impaired Patients” (Theoretical Medicine and Bioethics 23 (2002):45–53), Giovanni Maio has developed a thought-provoking argument for the permissibility of non-therapeutic research on cognitively impaired patients. Maio argues that his conclusion follows from the acceptance of John Rawls’s principles of justice, specifically, Rawls’s “liberty principle” Maio has misinterpreted Rawls’s “libertyprinciple” – correctly interpreted it does notsupport non-therapeutic research on cognitivelyimpaired patients. Three other ‘Rawlsian’ arguments are suggested by (...) Maio’s discussion –two “self-respect” arguments and a “presumed consent” argument – but none of them are convincing. However, an alternative argument developed from Rawls’s discussion of “justice in health care” in his most recent book, Justice as Fairness: A Restatement, may justify certain kinds of non-therapeutic research on some cognitively impaired patients in special circumstances. We should not expect anything more permissive from a liberal theory of justice. (shrink)

The human self model suggests that the construct of self involves functions such as agency, body-centered spatial perspectivity, and long-term unity. Vogeley, Kurthen, Falkai, and Maieret (1999) suggest that agency is subserved by the prefrontal cortex and other association areas of the cortex, spatial perspectivity by the prefrontal cortex and the parietal lobes, and long-term unity by the prefrontal cortex and the temporal lobes and that all of these functions are impaired in schizophrenia. Exploring the connections between the prefrontal cortex (...) and the construct of self, the present article extends the application of the self model to autism. It suggests that in contrast to schizophrenia, agency and spatial perspectivity are probably preserved in autism, but that, similarly to schizophrenia, long-term unity is probably impaired. This hypothesis is compatible with a model of neuropsychological dysfunction in autism in a neural network including parts of the prefrontal cortex, the temporal lobes, and the cerebellum. (shrink)

The claim that we have a moral obligation, where a choice can be made, to bring to birth the 'best' child possible, has been highly controversial for a number of decades. More recently Savulescu has labelled this claim the Principle of Procreative Beneficence. It has been argued that this Principle is problematic in both its reasoning and its implications, most notably in that it places lower moral value on the disabled. Relentless criticism of this proposed moral obligation, however, has been (...) unable, thus far, to discredit this Principle convincingly and as a result its influence shows no sign of abating. I will argue that while criticisms of the implications and detail of the reasoning behind it are well founded, they are unlikely to produce an argument that will ultimately discredit the obligation that the Principle of Procreative Beneficence represents. I believe that what is needed finally and convincingly to reveal the fallacy of this Principle is a critique of its ultimate theoretical foundation, the notion of impersonal harm. In this paper I argue that while the notion of impersonal harm is intuitively very appealing, its plausibility is based entirely on this intuitive appeal and not on sound moral reasoning. I show that there is another plausible explanation for our intuitive response and I believe that this, in conjunction with the other theoretical criticisms that I and others have levelled at this Principle, shows that the Principle of Procreative Beneficence should be rejected. (shrink)

We develop the concept of a volitional disability as an aid in understanding those patients who behave in ways that are harmful to themselves in spite of their desire to do otherwise. Using this concept enables us to describe their behavior as intentional but ‘unvoluntary’. We demonstrate the clinical reality of such behavior by giving clinical examples of the behavior of those with phobic, compulsive, and addictive disorders. We then attempt to show how some (...) kinds of self-harming behavior of noncompliant patients are similar to phobic and compulsive behavior. We propose use of the concept of volitional disability to make it easier for physicians to work with these noncompliant patients and thus to improve their ability to provide better care for them. Keywords: alcoholism, volitional disability, physician attitudes, addictive, disorders, compulsions, phobias, noncompliance CiteULike Connotea Del.icio.us What's this?. (shrink)

Nursing homes and other institutionsdesigned for persons with impairments are not,in fact, designed for persons with impairments.They are typically designed for theimpairments, not the persons, and therebybecome a part of the problem by reinforcingphysical and cultural manifestations of theimpairments. In the essay that follows, Idescribe an architectural design project inwhich students were asked to make changes to anexisting nursing home for the persons who livedthere. This requires not only becoming familiarwith the spaces, but with the personsthemselves and designing space to (...) helparticulate their voices and being. (shrink)

This article is a philosophical and clinical investigation of the existential meaning of immobility which takes as its starting point Erwin Straus's writings on upright posture and movement. Physical restriction due to prolonged bed rest, traction, or confinement in an intensive care unit has long been recognized to have detrimental effects on the patient's overall physical well being (Asher, 1947; Olson, 1967; Pollard et al. , 1976: and Zubek et al. , 1969). Nevertheless, the adverse psychological and existential results of (...) immobilization for the hospitalized patient have received little attention until recent times (Hammer and Kenan, 1980, p. 124). Even today, more research has focused on psychological aspects of sensory deprivation than on those of immobilization. This essay is both a philosophical and clinical inquiry which will investigate the existential meaning of immobility; that is, perception of one's own body on the part of patients who are living through the experience of immobility due to traction. The "lived-body" is more than an "image" or "picture": it is also a means of perceiving the world, an instrument for action, a means of interacting with others, and a medium for expressing one's individuality (Shontz. 1974. p. 465). In short, as Straus observes, the body is that "here" which is the ground for our ability to act in the world which is "there" (Spicker, 1976, p. 149). These latter considerations will prove useful in an examination of the experience of immobility. This article is divided into four parts. First, currently held assumptions about movement and sensation will be outlined and their philosophical origins will be traced. Second, Straus's own definitive writings on upright posture and movement will be discussed. Third, a clinical study involving immobilized orthopedic patients is described and its findings reviewed. Fourth, some ways of alleviating some of the concerns of immobilized patients are suggested. Keywords: Disability, Self-World CiteULike Connotea Del.icio.us What's this? (shrink)

Amyotrophic lateral sclerosis (ALS; also called motor neuron disease) is a devastating medical condition that progressively robs patients of their ability to move, speak and eventually breathe. At present, many physicians are hesitant to propose tracheostomy and respiratory support in the terminal phase of ALS. In accordance with the principle of patient autonomy, physicians should respect the right of the ALS patient to accept or refuse any treatment, including mechanical ventilation. Also, in environments where euthanasia or physician-assisted death is legal, (...) such requests can be acceptable. At least two conditions are necessary for full autonomy. To have a claim on full autonomy, people need to have intact cognitive abilities, and to exercise this right they must be able to communicate. In the past, the first condition was in doubt (indeed, overlap with other neurodegenerative diseases is sometimes suspected and some patients with ALS are thought to have associated frontotemporal dementia) and the second was severely compromised in patients with devastating motor impairment (communication being limited to the twitch of a finger or the blink of an eye). In this issue of J Neurol Neurosurg Psychiatry, Lakerveld and colleagues1 investigated cognition in 11 patients with late stage ALS (see page 25). They showed preserved cognitive functioning (ie, language, executive function, intelligence, learning and long term memory) compared with healthy controls. Assessments were exclusively based on a ‘‘yes–no’’ response mode. Because of the absence of verbal and motor communication, the neuropsychological assessment of these patients is complicated, and adapted testing is needed. By using a ‘‘yes–no’’ response mode based on the remaining motor abilities of the patient, this study proves the possibility of assessing patients with minimal motor capacities. (shrink)

This is the most detailed, sophisticated and comprehensive treatment of autonomy currently available. Moreover it argues for a quite different conception of autonomy from that found in the philosophical literature. Professor Berofsky claims that the idea of autonomy originating in the self is a seductive but ultimately illusory one. The only serious way of approaching the subject is to pay due attention to psychology, and to view autonomy as the liberation from the disabling effects of physiological and psychological afflictions. A (...) sustained critique of concepts such as moral autonomy, self-realisation, ideal autonomy, and identification is offered. The author replaces these with an alternative model that reveals how spontaneity, vitality and competence enable human beings to act in the real world. (shrink)

Phillips & Silverstein (P&S, 2003) propose that NMDA-receptor dysfunction may be the fundamental neurobiological mechanism underlying and associating impaired holistic perception and cognitive coordination with schizophrenic psychopathology. We discuss how the P&S hypothesis shares different aspects of the weak central coherence account of autism from both theoretical and experimental perspectives. Specifically, we believe that neither those persons with autism nor those with schizophrenia integrate visuo-perceptual information efficiently, resulting in incongruous internal representations of their external world. However, although NMDA-hypofunction may be (...) responsible for perceptual impairments in schizophrenia and possibly autism, we suggest that it is highly unlikely that NMDA-hypofunction is specifically responsible for the autistic behavioral symptomology, as described by P&S in their target article. (shrink)

: This paper engages with theories of the monstrous maternal in feminist philosophy to explore how examples of visual art practice by Susan Hiller, Marc Quinn, Alison Lapper, Tracey Emin, and Cindy Sherman disrupt maternal ideals in visual culture through differently imagined body schema. By examining instances of the pregnant body represented in relation to maternal subjectivity, disability, abortion, and "prosthetic" pregnancy, it asks whether the "monstrous" can offer different kinds of figurations of the maternal that acknowledge the agency and (...) potential power of the pregnant subject. (shrink)

In the January 2002 issue of Studies in Philosophy and Education, Erevelles (Voices of Silence) argues that recent debates over a means of communication known as facilitated communication reveal a tendency by virtually all discussions to ``uphold traditional notions of autonomy.'' While agreeing with Erevelles' basic critique concerning the societal dominance of the notion that independent agency resides in the individual, the author points out that Erevelles' case would be considerably more compelling, and also more sympathetic to the struggles of (...) people with disabilities who use facilitation to communicate, were her analysis to include a detailed accounting of the ``evidence'' that objectivists find inconvenient and not worth mentioning. (shrink)

We have shown in a computational model that a poor memory for context could result in some of the behaviors associated with ADHD, which is well in line with the dynamic developmental theory. Given the important role of context in extinction, a weaker context due to a steeper delay-of-reinforcement gradient would result in impaired inhibition.

Patients with behavioral variant of frontotemporal dementia (FTD) have difficulties recognizing facial emotions, a deficit that may contribute to their impaired social skills. In three experiments, we investigated the FTD deficit in recognition of facial emotions, by comparing six patients with impaired social conduct, nine Alzheimer’s patients, and 10 age-matched healthy adults. Experiment 1 revealed that FTD patients were impaired in the recognition of negative facial emotions. Experiment 2 replicated these findings when participants had to determine whether two faces were (...) expressing the same or different emotions. Experiment 3 was a control study in which participants had to discriminate whether two faces were of the same sex. In this non-emotional processing task, both patient groups performed worse than normal participants, but FTD patients performed as well as Alzheimer’s patients. We conclude that FTD patients are impaired in the recognition of negative facial emotions. © 2005 Elsevier Ltd. All rights reserved. (shrink)

By combining a flanker task and a cuing task into a single paradigm, the authors assessed the effects of orienting and alerting on conflict resolution and explored how normal aging and Alzheimer’s disease (AD) modulate these attentional functions. Orienting failed to enhance conflict resolution; alerting was most beneficial for trials without conflict, as if acting on response criterion rather than on information processing. Alerting cues were most effective in the older groups— healthy aging and AD. Conflict resolution was impaired only (...) in AD. Orienting remained unchanged across groups. These findings provide evidence of different life span developmental and clinical trajectories for each attentional network. (shrink)

Psychopathy is a developmental disorder associated with specific forms of emotional dysfunction and an increased risk for both frustration-based reactive aggression and goal-directed instrumental antisocial behavior. While the full behavioral manifestation of the disorder is under considerable social influence, the basis of this disorder appears to be genetic. At the neural level, individuals with psychopathy show atypical responding within the amygdala and ventromedial prefrontal cortex (vmPFC). Moreover, the roles of the amygdala in stimulus-reinforcement learning and responding to emotional expressions and (...) vmPFC in the representation of reinforcement expectancies are compromised. The implications of these functional impairments for responsibility are discussed. (shrink)

The International Conference on Harmonization of Technical Requirements for Registration of Pharmaceuticals for Human Use (ICH) was formed over 20 years ago with a goal of harmonizing research regulations among the European Union, United States, and Japan. Harmonization was intended to speed approval of pharmaceuticals, avoid unnecessary repetition of studies, and ensure protection of research participants. This paper examines United States, European Union, and ICH pediatric research regulations in five domains: parental permission, assent/dissent, payment, risk/benefit and inclusion of disabled children/wards (...) of state. The purpose is to examine similarities and differences among the regulations to help investigators, policy makers and the public to understand what each regulatory framework can learn from the others. Additionally, the paper suggests philosophical differences in how these entities view pediatric research which may serve as barriers to harmonization in the future. (shrink)

A perspective is developed for approaching affliction as a social fact. Disability and disease are considered as two ways in which we suffer a disjunction which arises from the need to take initiative with respect to the inexorable, whether that means the mark of disability or the unconquerability of disease.The story of affliction always raises and masks in certain respects the problem of suffering as the collective representation of our experience of subjectivity where that experience passes through the separateness of (...) being marked to the singularity of being without hope. (shrink)

This essay is written in the belief that questions relating to the treatment of impaired and imperiled newborns cannot be adequately resolved in the absence of a general moral theory of parent-child relations. The rationale for treatment decisions in these cases should be consistent with principles that ought to govern the normal work of parenting. The first section of this paper briefly examines the social contract theory elaborated by John Rawls in his renowned book A Theory of Justice and extracts (...) from it normative principles that can guide us in our attempt to lay a rational foundation for parenthood. The second section clarifies the implications of a Rawlsian theory for the problem at hand by examining several standards that have been proposed for the treatment of impaired newborns: the strict right-to-life standard, the medical decision standard, and the quality-of-life standard. A Rawlsian standard, by contrast, is autonomy-based. That is, it would have us base our treatment decisions on consideration of the child's capacity for developing critical rationality in making decisions on his or her own. This standard, it is suggested, avoids morally objectionable features of the others. (shrink)

Cost-effectiveness analysis is the standard analytical tool for evaluating the aggregate health benefits of treatments, interventions, or health programs. It works by comparing the ratio of costs and benefits of different alternatives. The lower the ratio, the more effective the treatment, intervention, or program. The use of cost-effectiveness analysis can ensure that scarce health care resources are allocated in a way that maximizes the satisfaction of health needs. According to a common objection, however, the use of cost-effectiveness analysis for setting (...) priorities in the allocation of health care resources may lead to unfair discrimination against people with disabilities.The aim of the first part of this .. (shrink)

Cost effectiveness analysis is a tool for evaluating the aggregate benefits of medical treatments, health care services, and public health programs. Its opponents often claim that its use leads to unfair discrimination against people with disabilities. My aim in this paper is to clarify the conditions under which this might be so. I present some ways in which the use of cost effectiveness analysis can lead to discrimination and suggest why these forms of discrimination may be unfair. I also discuss (...) some proposals for avoiding discrimination without rejecting cost effectiveness analysis altogether. I argue that none of these proposals is ultimately convincing. I describe a different approach to the problem and conclude by answering the question in the title. (shrink)

The determinative issue in applying the insanity defense is whether the defendant experienced a legally relevant functional impairment at the time of the offense. Categorical exclusion of personality disorders from the definition of mental disease is clinically and morally arbitrary because it may lead to unfair conviction of a defendant with a personality disorder who actually experienced severe, legally relevant impairments at the time of the crime. There is no need to consider such a drastic approach in most states and (...) in the federal courts, where the sole test of insanity is whether the defendant was “unable to appreciate the wrongfulness of his conduct at the time of the offense.” This is because the only symptoms that are legally relevant in such jurisdictions are those that impair reality-testing and thereby affect the person's capacity to understand the nature and consequences of her actions. However, if the test of insanity includes a “volitional prong” (inability to control one's behavior), some way must be found to limit the scope of the defense to the core cases (involving psychotic conditions) to which it has traditionally been applied, and to prevent a shift toward a deterministic account of criminal conduct — i.e., “people can't help being who they are and doing what they do.” The best way of accomplishing this is to limit the definition of mental disease to severe disorders characterized by gross disturbances of the person's capacity to understand reality. (shrink)

Suppose that you are soon to be a parent and you learn that there are some simple measures that you can take to make sure that your child will be healthy. In particular, suppose that by following the doctor’s advice, you can prevent your child from having a disability, you can make your child immune from a number of dangerous diseases and you can even enhance its future intelligence. All that is required for this to happen is that you (or (...) your partner) comply with lifestyle and dietary requirements. Do you and your partner have any moral reasons (or moral obligations) to follow the doctor’s advice? Would it make a difference if, instead of following some simple dietary requirements, you consented to genetic engineering to make sure that your child was free from disabilities, healthy and with above average intelligence? In this paper we develop a framework for dealing with these questions and we suggest some directions the answers might take. (shrink)

A large body of literature agrees that persons with schizophrenia suffer from a Theory of Mind (ToM) deficit. However, most empirical studies have focused on third-person, egocentric ToM, underestimating other facets of this complex cognitive skill. Aim of this research is to examine the ToM of schizophrenic persons considering its various aspects (first vs. second order, first vs. third person, egocentric vs. allocentric, beliefs vs. desires (...) vs. positive emotions vs. negative emotions and how each of these mental state types may be dealt with), to determine whether some components are more impaired than others. We developed a Theory of Mind Assessment Scale (Th.o.m.a.s.) and administered it to 22 persons with a DSM-IV diagnosis of schizophrenia and a matching control group. Th.o.m.a.s. is a semi-structured interview which allows a multi-component measurement of ToM. Both groups were also administered a few existing ToM tasks and the schizophrenic subjects were administered the Positive and Negative Symptoms Scale and the WAIS-R. The schizophrenic persons performed worse than control at all the ToM measurements; however, these deficits appeared to be differently distributed among different components of ToM. Our conclusion is that ToM deficits are not unitary in schizophrenia, which also testifies to the importance of a complete and articulated investigation of ToM. (shrink)

Dysfunctions of the neural circuits that implement social behavior are necessary but not a sufficient condition to develop schizophrenia. We propose that schizophrenia represents a disease of general connectivity that impairs not only the “social brain” networks, but also different neural circuits related with higher cognitive and perceptual functions. We discuss possible mechanisms and evolutionary considerations.

In reply to commentary on our target article, we supply further evidence and hypotheses in the description of ritualized behaviors in humans. Reactions to indirect fitness threats probably activate specialized precaution systems rather than a unified form of danger-avoidance or causal reasoning. Impairment of precaution systems may be present in pathologies other than obsessive-compulsive disorder (OCD), autism in particular. Ritualized behavior is attention-grabbing enough to be culturally transmitted whether or not it is associated with group identity, cohesion, or with any (...) other social aspect of collective ceremonies. (Published Online February 8 2007). (shrink)

The transhumanist literature encompasses diverse nonnovel positions on questions of disability and obligation reflecting long-running political philosophical debates on freedom and value choice, complicated by the difficulty of projecting values to enhanced beings. These older questions take on a more concrete form given transhumanist uses of biotechnologies. This paper will contrast the views of Hughes and Sandberg on the obligations persons with "disabilities" have to enhance and suggest a new model. The paper will finish by introducing a distinction between the (...) responsibility society has in respect of the presence of impairments and the responsibility society has not to abandon disadvantaged members, concluding that questions of freedom and responsibility have renewed political importance in the context of enhancement technologies. (shrink)

Protecting the Vulnerable explores the reality of patient control and choice in health care and analyzes how decisions should be made on behalf of those deemed incapable of making decisions. The contributors, distinguished experts from the disciplines of medicine, ethics, theology, and law, look at the complex problem of autonomy and consent in health care and clinical research today from an illuminating perspective--its impact on the vulnerable members of society. The essays move from the exploration of lingering paternalism in health (...) care to the acute dilemma of treatment of and research on newborn babies. In covering both general and specific problems the collection reveals how exploitation can occur when the right of autonomy is eroded and where informed consent is illusory. Particularly vulnerable groups, such as children and people with mental handicaps, are discussed alongside cases where the vulnerability is itself an issue. Other areas covered include: `gesture' suicides, the practical problems of doctors in dealing with dependent patients, and the limits of proxy consent. All health care professionals, ethicists, policy makers, and lawyers currently engaged in the study or practice of health care ethics will find Protecting the Vulnerable to be a vital source of information for many years to come. (shrink)

An argument often made against the genetic elimination of disability is that to prevent people with a particular genetic make-up being born is to disvalue, or even threaten, those people who actually have it. The thought is that the view that the world would be a better place without, say, Huntingdon’s Chorea, must imply that the world would be a better place without those people who currently have it. In opposition to this objection to the elimination of genetically based conditions, (...) I argue (i) that there is no significant moral difference in this regard between the elimination of genetically based and other conditions; and thus (ii) that there is no such implication. As consideration of all sorts of non-genetic examples of a person’s condition shows, to disvalue that condition is not to disvalue the person whose condition it is. No negative attitude to polio sufferers is implied by the attempt to rid the world of polio, for example. Indeed, just the opposite conclusion can be drawn. (shrink)

In this article I seek to say what it is for something to count as a neglected disease. I argue that neglect should be defined in terms of efforts at prevention, mitigation and cure, and not solely in terms of research dollars per disability-adjusted life-year. I further argue that the trend towards multifactorialism and risk factor thinking in modern epidemiology has lent credibility to the erroneous view that the primary problem with neglected diseases is a lack of research. A more (...) restrictive contrastive model of disease is endorsed as better suited to the definition of neglected disease. (shrink)

In 1990 the landmark Americans with Disabilities Act (ADA) became federal law with the express purpose to “establish a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities."l The act includes separate titles prohibiting discrimination on the basis of disability in employment, public services, transportation and public accommodations. Since it prohibits discrimination on the basis of disability in both public and private services and programs, in health care “it applies to programs provided by the government, (...) benefits provided by employers, and services pro- ”2 vided by physicians.Moreover, the ADA defines disability broadly to include “any.. (shrink)

In this paper I address the relation between just claims to health care and severe cognitive impairment from dementia. Two general approaches to justice in allocation of health care are distinguished – prudential allocation and interpersonal distribution. First, I analyze why a patient who has died has no further claims to health care. Second, I show why prudential allocators would not provide for health care treatment should they be in a persistent vegetative state. Third, I argue that the destruction of (...) personal identity from severe dementia implies that only claims to palliative, but not life-sustaining, health care remain. Finally, I argue that the prudential allocator approach is indeterminate regarding life-sustaining care for the moderately demented and that social policy should not deny that care to patients. Keywords: elderly, health care, the severely-demented, justice CiteULike Connotea Del.icio.us What's this? (shrink)

Introduction ADAM CURETON AND KIMBERLEY BROWNLEE Disability and disadvantage are interrelated topics that raise important and sometimes overlooked issues in ...