Physical Disabilities

A review of Elizabeth Barnes' The Minority Body.

The privation theory of evil (PTE) states that evil is the absence of some good that is supposed to be present. For example, if vision is an intrinsic good, and if human beings are supposed to have vision, then PTE implies that a human being’s lacking vision is an evil, or a bad state of affairs. The mere-difference view of disability (MDD) states that disabilities like blindness are not inherently bad. Therefore, it would seem that lacking sight is not a (...) bad state of affairs. Thus PTE and MDD seem to be in tension. This essay discusses that apparent tension and explains how it might be resolved without doing violence to either view. Given the prominence of PTE in the history of Christian theology, and the wide support for MDD among disability theorists, it is worth finding a way to harmonize these two views. (shrink)

If we were to write down all those things that we ordinarily categorise as disabilities, the resulting list might appear to be extremely heterogeneous. What do disabilities have in common? In this paper I defend the view that disabilities should be understood as particular kinds of inability. I show how we should formulate this view, and in the process defend the view from various objections. For example, I show how the view can allow that common kinds of inability are not (...) disabilities, can allow that minor kinds of inability are rightly not described as disabilities, and can allow that socially imposed inabilities need not be disabilities. In the second half of the paper, I show that this theory is superior to rival theories. I criticize the wellbeing theory of disability (Kahane and Savulescu 2009, Savulescu and Kahane 2011, Harris 2001) and conventionalist theories of disability (e.g. Barnes 2016). Finally, I show how the inability theory is consistent with the best versions of the social model of disability. (shrink)

Advances in prosthetic design should benefit people with limb difference. But empirical evidence demonstrates a lack of uptake of prosthetics among those with limb difference, including of advanced designs. Non-use is often framed as a problem of prosthetic design or a user’s response to prosthetics. Few studies investigate user experience and preferences, and those that do tend to address satisfaction or dissatisfaction with functional aspects of particular designs. This results in limited data to improve designs and, we argue, this is (...) pragmatically and ethically problematic. This paper presents results of a survey we conducted in 2017 with people with upper limb difference in Australia. The survey sought to further knowledge about preferences surrounding prosthetics and understanding of how preferences relate to user experience, perspective, and context. Survey responses demonstrated variety in the uptake, use and type of prosthetic—and that use of, preferences about, and impacts of prosthetics rely not just on design factors but on various contextual factors bearing on identity and social understandings of disability and prosthetic use. From these results, we argue that non-use of prosthetics could be usefully reframed as an issue of understanding how prosthetics can best support users’ autonomy. This supports the claim that there is a need to incorporate user engagement into design processes for prosthetic limbs, though further work is needed on methods for doing so. (shrink)

What is it for something to be a disability? Elizabeth Barnes, focusing on physical disabilities, argues that disability is a social category. It depends on the rules undergirding the judgements of the disability rights movement. Barnes’ account may strike many as implausible. I articulate the unease, in the form of three worries about Barnes’ account. It does not fully explain why the disability rights movement is constituted in such a way that it only picks out paradigmatic disability traits, nor why (...) only the traits identified by the movement as constituting experiences of social and political constraint count as disability. It also leaves out the contribution of people other than disability activists, to the definition of disability. I develop Barnes’ account. On my account, a person is disabled if she is in some state which is constitutive of some constraint on her legitimate interests. This state must be the subject of legitimate medical interest and be picked out by the disability rights movement as among the traits for which they are seeking to promote progress and change. My account addresses the worries about Barnes’ account. It is also able to include all disabilities, rather than only physical ones. (shrink)

This article explores how visual images of dependency and care reflect and reinforce perceptions of people who are ill, disabled, or otherwise dependent, those who sustain them, and the meaning of the work they do. Scenes of care are a valuable index for understanding cultural assumptions about who is deserving of care, how and where care should be given, and who is obligated to serve as a giver of care. It positions these images in the context of the emphasis, within (...) the disability rights movement, on independence. I argue that the insistence on independence entails a form of what Lauren Berlant calls "cruel optimism"—desire for the very things that undermine happiness and well-being—because they rely on a willful disregard of the inevitable interdependency that is a fact of all human existence, as well as the particular forms of dependency that pertain to many disabled bodies. The end of the article considers works of visual art that challenge dominant modes for representing how care is given and received. If the invisibility of caregiving is one aspect of our willful forgetting that all bodies are dependent, I'll argue that visual images of care are an essential resource for recognizing and reimagining its status in our society. One desired outcome of such reconsideration would be to complicate the meaning of autonomy—as it relates to choosing disability—as well as how the work of caregiving is acknowledged and valued. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many philosophers treat with open skepticism, and sometimes (...) even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

Eilers Miriam, Gru¨ber Katrin, and Rehmann-Sutter Christoph’s latest edited volume, The Human Enhancement Debate and Disability: New Bodies for a Better Life, may at first seem to be just another book about human enhancement, on which there is a significant detailed literature. But, in fact, this book provides a novel16 perspective to the human enhancement debate by observing it through the disability lens, even as it gathers contributions from various experts from diverse fields. This interdisciplinary approach shows how disability and (...) human enhancement are tightly correlated in the debate on the latter. (shrink)

This paper examines the impact of disability on wellbeing and presents arguments against the mere-difference view of disability. According to the mere-difference view, disability does not by itself make disabled people worse off on balance. Rather, if disability has a negative impact on wellbeing overall, this is only so because society is not treating disabled people the way it ought to treat them. In objection to the mere-difference view, it has been argued, roughly, that the view licenses the permissibility of (...) causing disability and the impermissibility of causing nondisability. In her recent article, “Valuing Disability, Causing Disability”, Elizabeth Barnes attempts to show that this causation-based objection does not succeed. We disagree and argue why. We begin by explaining that in order to defeat the causation-based objection it does not suffice to show that it is not always true that the mere-difference view licenses causing disability. Rather, license in some cases, in a way that undermines the plausibility of the mere-difference view, would be sufficient for the causation-based objection to succeed. Then our discussion turns to an important challenge for proponents of the causation-based objection: Some defenders of the mere-difference view are prepared to simply accept the counterintuitive implications of their position. A dialogue with such proponents of the mere-difference view requires arguments with independent traction. We present several such arguments to the effect that the mere-difference view needs to be significantly reduced in scope – and may turn out to be false altogether. (shrink)

Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based on subjective assessments, (...) people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency. (shrink)

Although several studies propose that the integrity of neuronal assemblies may underlie a phenomenon referred to as awareness, none of the known studies have explicitly investigated dynamics and functional interactions among neuronal assemblies as a function of consciousness expression. In order to address this question EEG operational architectonics analysis (Fingelkurts and Fingelkurts, 2001, 2008) was conducted in patients in minimally conscious (MCS) and vegetative states (VS) to study the dynamics of neuronal assemblies and operational synchrony among them as a function (...) of consciousness expression. We found that in minimally conscious patients and especially in vegetative patients neuronal assemblies got smaller, their life-span shortened and they became highly unstable. Furthermore, we demonstrated that the extent/volume and strength of operational synchrony among neuronal assemblies was smallest or even absent in VS patients, intermediate in MCS patients and highest in healthy fully-conscious subjects. All findings were similarly observed in EEG alpha as well as beta1 and beta2 frequency oscillations. The presented results support the basic tenets of Operational Architectonics theory of brain-mind functioning and suggest that EEG operational architectonics analysis may provide an objective and accurate means of assessing signs of (un)consciousness in patients with severe brain injuries. Therefore this methodological approach may complement the existing “gold standard” of behavioral assessment of this population of challenging patients and inform the diagnostic and treatment decision-making processes. (shrink)

“Breast cancer is all around us.” This is how Robert Aronowitz, a medical doctor, opens his timely Unnatural History: Breast Cancer and American Society. We are all familiar with the truism that “one in eight American women” will develop invasive breast cancer over the course of her lifetime. The pink ribbon has come to symbolize both solidarity and hope. Mammograms and “Self-Breast Examination” have become part of women’s daily routine, if not a spectre haunting their daily lives. Yet the evidence (...) remains contested and the therapeutic promise, the fear and hope associated with this “obstinate” disease as problematic as ever. Unnatural History weaves all these different elements, artifactual and natural, emotional and rational, vital and morbid, in the socio-historical narrative of breast cancer in the American context. In that sense, this is an “unnatural” history, a history of how “fear” and “risk” have been reshaping a disease, which continues to be as elusive as it was two centuries ago. (shrink)

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)

Ethics & Behavior, Volume 21, Issue 5, Page 428-430, September-October 2011.

At the beginning of the 21st century, fibromyalgia syndrome (FM) has become a diagnostic category that includes extremely large numbers of people, predominantly women. Estimates that perhaps 2 to 4% of the adult population suffer from FM have been widely accepted. Moreover, patients diagnosed with FM have incurred substantial medical costs, to say nothing about high rates of disability. Yet the diagnosis has remained highly contested, and there are competing etiological theories and therapies. Indeed, a leading authority has identified what (...) he calls the "fibromyalgia wars" (Wolfe 2009). To some, the syndrome is "an age-old malady begging for respect" (Powers 1993). To others, it is a form of "labeling woefulness" .. (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)

I was invited to join the Seattle Growth Attenuation and Ethics Working Group—collective author of the lead article in this issue of the Report—but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on. As a person (...) who has long advocated on behalf of people actively made disabled by charitable pediatric attempts to make them more normal, I breathed a sigh of relief when reading the group’s recommendation that growth attenuation be registered and .. (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.

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.

It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (shrink)

This paper considers the importance of the body for self-esteem, communication, and emotional expression and experience, through the reflections of those who live with various neurological impairments of movement and sensation; sensory deafferentation, spinal cord injury and Möbius Syndrome. People with severe sensory loss, who require conscious attention and visual feedback for movement, describe the imperative to use the same strategies to reacquire gesture, to appear normal and have embodied expression. Those paralysed after spinal cord injury struggle to have others (...) see them as people rather than as people in wheelchairs and have been active in the disability movement, distinguishing between their medical impairment and the social induced disability others project onto them. Lastly those with Möbius reveal the importance of the face for emotional expression and communication and indeed for emotional experience itself. All these examples explore the crucial role of the body as agent for social and personal expression and self-esteem. (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)

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic nosology (...) about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice. (shrink)

This article explores the ethical implications of the goal of functional independence for persons with disabilities. Central to independence is protection against the fear and uncertainty of future dependency and assurance of a level of social status. Moreover, independence reflects individualism, autonomy and control of decisions about one's life. Dependency, in contrast, implies the inability to do things for oneself and reliance on others to assist with tasks of everyday life. The ethics of independence are explored within the context of (...) the medical and social constructionist models of disability and contrasted against the ethics of support that underscores self-regulated dependency. Self-regulated dependency gives emphasis to the need for support created through relationships, choices and the management of resources. Finally, the article concludes with a challenge to meaningfully translate the principles of ethics to the multiplicity of adapted physical activity contexts. (shrink)

The literature of bioethics suffers from two serious problems. (1) Most authors are unable to take seriously both the rights of the great apes and of severely disabled human infants. Rationalism—moral status rests on rational capacities—wrongly assigns a higher moral status to the great apes than to all severely disabled human infants with less rational capacities than the great apes. Anthropocentrism—moral status depends on membership in the human species—falsely grants all humans a higher moral status than the great apes. Animalism—moral (...) status is dependent on the ability to suffer—mistakenly equates the moral status of humans and most animals. (2) The concept person is widely used for justificatory purposes, but it seems that it cannot play such a role. It seems that it is either redundant or unable to play any justificatory role. I argue that we can solve the second problem by understanding person as a thick evaluative concept. This then enables us to justify assigning a higher moral status to the great apes than to simple animals: the great apes are persons. To solve the first problem, I argue that certain severely disabled infants have a higher moral status than the great apes because they are dependent upon human relationships for their well-being. Only very limited abilities are required for such relationships, and the question who is capable of them must be based on thick evaluative concepts. Thus, it turns out that to make progress in bioethics we must assign thick evaluative concepts a central role. (shrink)

Recent policy developments in the general area of disability have presented a whole range of ethical dilemmas for everyone involved in the development and delivery of services for disabled people at the national and local levels. This is almost certainly due to government acceptance of the principles of independent living and the social model of disability, and greater user involvement and control of support services, in particular ?direct payments?. This paper will centre on the ethical concerns that arise from recent (...) government policy regarding the latter. (shrink)

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)

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)

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.

In 1997, a Scottish surgeon by the name of Robert Smith was approached by a man with an unusual request: he wanted his apparently healthy lower left leg amputated. Although details about the case are sketchy, the would-be amputee appears to have desired the amputation on the grounds that his left foot wasn’t part of him – it felt alien. After consultation with psychiatrists, Smith performed the amputation. Two and a half years later, the patient reported that his life had (...) been transformed for the better by the operation [1]. A second patient was also reported as having been satisfied with his amputation [2]. (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)

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)

Couples should not be allowed to select either for or against deafnessRecently, a US couple deliberately attempted to ensure the birth of a deaf child via artificial insemination.1 In opposing this action, I wish to focus on one argument they employ to support it, namely that in trying to have a deaf child, the women see themselves as no different from parents trying to have a girl. Girls can be discriminated against the same as deaf people and “black people have (...) harder lives”, one of them argues. They compare themselves to a minority group.2In using this argument to justify their attempt to secure the birth of a deaf child, they make four claims: It is not wrong to deliberately try to have a child who is expected to experience harm when the harms the child will experience are socially imposed. As a group experiencing socially imposed harms, the deaf are to be understood as a minority group. Women and people of colour also experience social harms, and are to be understood as minority groups. Because the deaf, women, and people of colour are all groups experiencing socially imposed harms, distinctions should not be made between attempts to have a child who will be a member of one of these groups.In reply, I will advance two arguments. First, I will argue that this couple’s decision is inherently just. Here I will acknowledge that this couple’s position draws a great deal of strength from its appeal to the experiences of women. My second argument will contend, however, that despite the reasonableness of this choice, the intentional selection of deaf children is indefensible. Granting this couple’s contestable assertion that the deaf ought to be understood as a minority cultural group, allowing individuals to secure the birth of deaf …. (shrink)

Evidence from various subtypes of Specific Language Impairment and developmental peripheral dyslexias is presented to support the idea that even developmental disorders can be modular. However, in developmental letter position dyslexia and neglect dyslexia we show that additional errors can occur because of insufficient orthographic-lexical knowledge.

Either genetically specified modular cognitive architecture for syntactic processing does not exist (neuroconstructivism), or there is a module but its development is so abnormal in Williams syndrome (WS) that no conclusion can be drawn about its normal architecture (moderate nativism). Radical nativism, which holds that WS is a case of intact syntax, is untenable. Specific Language Impairment and WS create a dilemma that radical nativism cannot accommodate.

In Kimber v. Thiokol Corp., 196 F.3d 1092, the U.S. Court of Appeals for the Tenth Circuit upheld a U.S. District Court's grant of summary judgment against an employee's claim that an employeroperated disability insurance plan, which offered different levels of compensation for disabilities due to mental and physical conditions, violated Title I of the Americans with Disabilities Act. The Court of Appeals found that the Thiokol plan administrator's interpretations of the plan were not arbitrary and capricious, and that the (...) plan's different treatment of disabilities caused by physical and mental conditions did not violate the ADA. (shrink)

In this paper it is argued that questions in perinatal medicine concerning treatment or non-treatment of severely handicapped children, after or before birth, cannot be answered solely by referring to the general aims and objectives of medical treatment and its specific deontology. Justifications of decisions about treatment and non-treatment need to be placed in a broader context of discussions about social justice and the social significance of medical practice as a whole.

People with disabilities use more medical care and see health professionals more often than do those of the same age, ethnic group, or economic class who do not have impairments. An indisputable medical goal is.

This paper is prompted by the charge that the prevailing Western paradigm of medical knowledge is essentially Cartesian. Hence, illness, disease, disability, etc. are said to be conceived of in Cartesian terms. The paper attempts to make use of the critique of Cartesianism in medicine developed by certain commentators, notably Leder (1992), in order to expose Cartesian commitments in conceptions of disability. The paper also attempts to sketch an alternative conception of disability — one partly inspired by the work of (...) Merleau-Ponty. In particular, three key Cartesian claims are identified and subjected to criticism. These are as follows: (a) The claim that the body is an object, (b) what is termed here ‘the modularity thesis’, and (c) the claim that the body cannot be constitutive of the self (i.e. since the soul/mind/brain is). In opposition to these claims, it is argued that the body is properly viewed as a subject; that there are neither purely mental, nor purely physical disabilities; and that selves are constituted, at least in part, by their bodies. (shrink)

The Human Genome Project will produce information permitting increasing opportunities to prevent genetically transmitted harms, most of which will be compatible with a life worth living, through avoiding conception or terminating a pregnancy. Failure to prevent these harms when it is possible for parents to do so without substantial burdens or costs to themselves or others are what J call “wrongful handicaps”. Derek Parfit has developed a systematic difficulty for any such cases being wrongs — when the harm could be (...) prevented only by preventing the existence of the individual who would have a worthwhile life even with the handicap, then bringing him into existence with the handicap does not make him worse off and so does not wrong him. I argue that a non “person‐affecting” principle requiring the avoidance of suffering and limited opportunity correctly accounts for cases of wrongful handicaps without requiring that the individuals with the handicap have been made worse off and therefore wronged. It is an advantage, not a difficulty, of this account that it does not imply that the person with the handicap has been wronged or is a victim with a special moral complaint. (shrink)

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)