A question between John Harris and I is the degree to which lessons may be learned, and insights gained, from a life distinguished by physical differences. He argues it as the “aborting Beethoven fallacy”, I insist on the evidence that what we learn from physical differences may be critical and life enhancing.

The term body integrity identity disorder (BIID) describes the extremely rare phenomenon of persons who desire the amputation of one or more healthy limbs or who desire a paralysis. Some of these persons mutilate themselves; others ask surgeons for an amputation or for the transection of their spinal cord. Psychologists and physicians explain this phenomenon in quite different ways; but a successful psychotherapeutic or pharmaceutical therapy is not known. Lobbies of persons suffering from BIID explain the desire for amputation in (...) analogy to the desire of transsexuals for surgical sex reassignment. Medical ethicists discuss the controversy about elective amputations of healthy limbs: on the one hand the principle of autonomy is used to deduce the right for body modifications; on the other hand the autonomy of BIID patients is doubted. Neurological results suggest that BIID is a brain disorder producing a disruption of the body image, for which parallels for stroke patients are known. If BIID were a neuropsychological disturbance, which includes missing insight into the illness and a specific lack of autonomy, then amputations would be contraindicated and must be evaluated as bodily injuries of mentally disordered patients. Instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image. (shrink)

The term body integrity identity disorder (BIID) describes the extremely rare phenomenon of persons who desire the amputation of one or more healthy limbs or who desire a paralysis. Some of these persons mutilate themselves; others ask surgeons for an amputation or for the transection of their spinal cord. Psychologists and physicians explain this phenomenon in quite different ways; but a successful psychotherapeutic or pharmaceutical therapy is not known. Lobbies of persons suffering from BIID explain the desire for amputation in (...) analogy to the desire of transsexuals for surgical sex reassignment. Medical ethicists discuss the controversy about elective amputations of healthy limbs: on the one hand the principle of autonomy is used to deduce the right for body modifications; on the other hand the autonomy of BIID patients is doubted. Neurological results suggest that BIID is a brain disorder producing a disruption of the body image, for which parallels for stroke patients are known. If BIID were a neuropsychological disturbance, which includes missing insight into the illness and a specific lack of autonomy, then amputations would be contraindicated and must be evaluated as bodily injuries of mentally disordered patients. Instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image. (shrink)

Dashiell Hammett’s reaction was “sharp and angry, snarling” when he read, at her request, a work in progress by his friend and lover, Lillian Hellman. “He spoke as if I had betrayed him.” His judgment was absolute and his advice unsparing: “Tear this up and throw it away. It’s worse than bad—it’s half good.” That is exactly what I thought of Matti Häyry’s Rationality and the Genetic Challenge as, for the third time in the evening, I penned a note in (...) its margins and sent it sailing across the room in disgust. Cambridge University Press knows its book binding, however, and the spine of the text was undamaged. (shrink)

Bioethics promises a considered, unprejudicial approach to areas of medical decision-making. It does this, in theory, from the perspective of moral philosophy. But the promise of fairly considered, insightful commentary fails when word choices used in ethical arguments are prejudicial, foreclosing rather than opening an area of moral discourse. The problem is illustrated through an analysis of the language of The Royal Society Expert Panel Report: End of Life Decision Making advocating medical termination.

For all its apparent debate bioethical discourse is in fact very narrow. The discussion that occurs is typically within limited parameters, rarely fundamental. Nor does it accommodate divergent perspectives with ease. The reason lies in its ideology and the political and economic perspectives that ideology promotes. Here the ideology of bioethics' fundamental axioms is critiqued as arbitrary and exclusive rather than necessary and inclusive. The result unpacks the ideological and political underpinnings of bioethical thinking and suggests new avenues for a (...) broader debate over fundamentals, and a different approach to bioethical debate. (shrink)

The symposium in this issue, on equality and disability, helps to clarify some areas of continuing disagreement in disability studies, but also uncovers substantial consensus. All of the contributors appear to endorse John Harris's statement that “No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth, or value”.1 It seems safe to assume, moreover, that few if any readers of the Journal of Medical Ethics are likely to disagree with this, or indeed to challenge Kate (...) Diesfeld's initial assumption that “Generally speaking, it is both immoral and unlawful to discriminate between people on the ground of disability”.2Some, of course, might challenge Diesfeld's choice of the word “between” rather than “against”. What is generally agreed to be both immoral and unlawful is discrimination in the modern sense of treating people unjustly on the basis of distinctions that are not morally relevant to the matter in hand. It is neither immoral nor illegal, for example, for a transport employee to discriminate between members of the travelling public in order to offer some but not others the use of a wheelchair or a wheelchair ramp. Nor is it immoral or illegal for society to discriminate between its members through legislation which offers, to some but not others, special forms of aid or protection, based on the recognition of their respective disabilities.Legislation designed to protect people …. (shrink)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. Inthis (...) case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (shrink)

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (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)

It is now broadly accepted that disability is a concept infused with both descriptive and evaluative meaning, such that invoking the concept of disability necessarily involves making judgements of moral value as well as describing certain facts about individuals. This paper aims to map the complex terrain that shapes our current understandings of disability by outlining five distinct ‘discourses of disability’. It is shown how the similarities and differences between the discourses hinge on different ways of making sense of the (...) descriptive and evaluative dimensions of the concept, and the relationships between these dimensions. The paper concludes by considering the specific implications that these different ways of elucidating the concept of disability might have for the provision of clinical ethics support, both in terms of shaping ethical decision-making relating to people with disabilities and in terms of framing the process of providing clinical ethics support itself. (shrink)

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.

This paper is focused on the analysis of two documents (the Council of Europe's Bioethics Convention and the Additional Cloning Protocol) inasmuch as they refer to the relationship between human dignity and human genetic engineering. After presenting the stipulations of the abovementioned documents, I will review various proposed meanings of human dignity and will try to identify which of these seem to be at the core of their underlying assumptions. Is the concept of dignity proposed in the two documents coherent? (...) Is it morally legitimate? Is it, as some might assume, of Kantian origin? Does it have any philosophical roots? (shrink)

Disability activists' redefinition of “disability” as a social, rather than a medical, problem attempts to reassign causality. We explicate the untenable implications of this approach and argue this definition is maleficent, unjust, and inconsistent. Thus, redefining disability as a socially caused phenomenon is, from a moral point of view, ill-advised.

Controversy swept the U.K. in January of 2000 over public disclosure of the fact that a Scottish surgeon named Robert Smith had amputated the limbs of two able-bodied individuals who reportedly suffered from a condition known as apotemnophilia. The patients, both of whom had sought and consented to the surgery, claimed they had desperately desired for years to live as amputees and had been unable, despite considerable efforts, to reconcile themselves psychologically to living with the bodies with which they were (...) born. Both surgeries were successful, and both patients, who had undergone psychiatric evaluation prior to the amputations, subsequently reported having no regrets. In the wake of a wave of sensationalistic stories in the media, the hospital at which the surgeries had been performed, the Falkirk and District Royal Infirmary, banned any future surgeries of the kind. Outraged local politicians promptly announced their intention to pass laws banning the procedure outright. One member of Scottish Parliament declared the surgery obscene and asserted that the whole thing is repugnant and legislation needs to be brought in now to outlaw this. (shrink)

Controversy swept the U.K. in January of 2000 over public disclosure of the fact that a Scottish surgeon named Robert Smith had amputated the limbs of two able-bodied individuals who reportedly suffered from a condition known as apotemnophilia. The patients, both of whom had sought and consented to the surgery, claimed they had desperately desired for years to live as amputees and had been unable, despite considerable efforts, to reconcile themselves psychologically to living with the bodies with which they were (...) born. Both surgeries were successful, and both patients, who had undergone psychiatric evaluation prior to the amputations, subsequently reported having no regrets. In the wake of a wave of sensationalistic stories in the media, the hospital at which the surgeries had been performed, the Falkirk and District Royal Infirmary, banned any future surgeries of the kind. Outraged local politicians promptly announced their intention to pass laws banning the procedure outright. One member of Scottish Parliament declared the surgery obscene and asserted that the whole thing is repugnant and legislation needs to be brought in now to outlaw this. (shrink)