This chapter contains sections titled: Why Philosophy and Cognitive Disability? Historical Overview Discussion of Themes and the Chapters Concluding Remarks References.

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the (...) “ethic of autonomy” – actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (shrink)

This chapter contains sections titled: Introduction Investing in Science: Child Health and U.S. Medicine in the Twentieth Century The Impact of Specific Medical Interventions The Changing Definition of ID The “Flynn Effect” and the Impact of Improved Public Health Conclusion References.

Euthanasia and assisted suicide have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: voluntary and well-considered request; unbearable suffering without prospect of improvement; informing the patient; lack of a reasonable alternative; independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees. The purpose of (...) this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. The 416 case summaries available on the RTE website were searched for intellectual disability and autism spectrum disorder. Direct content analysis was used on these nine cases. Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. (shrink)

This article develops an analysis of disability according to which disabling conditions are properties of organisms embedded in sets of environments. We begin by presenting the three mainstream accounts of disability—the medical, social, and interactionist models—and rehearsing some known limitations. We argue that, because of their primary focus on etiology, all three models share, more or less implicitly, a problematic assumption. This is the tenet that disabilities are individual properties. The second part of the essay presents (...) an “ecological” interpretation of disability, inspired by classic and contemporary research on biological niches. Our proposal preserves many insights underlying extant approaches, while allowing a more accurate characterization of the nature and experience of disability. We conclude by drawing some general implications of our analysis. (shrink)

Dehumanization Studies is a burgeoning field that has much to teach Critical Disability Studies and philosophers of disability. Conversely, a critical disability perspective can inform and challenge theoretical approaches to dehumanization. This paper attempts to forge a conversation between these interdisciplinary areas by exploring the phenomenon of dehumanization in relation to people with intellectual disabilities. It begins with a definition of disability dehumanization, and then explores the ways in which this form of dehumanization functions (...) dynamically at multiple levels, drawing from the history of ID and contemporary examples in moral philosophy. Ultimately it argues that it is essential to recognize the moral relevance of being human in order to challenge and prevent forms of disability dehumanization and de­fends this idea in the face of two objections (speciesism and posthumanism). (shrink)

Disability laws are crucial in ensuring a life of dignity for persons with disabilities. However, they remain limited and ineffective in the absence of adequate knowledge and awareness of the experiences with disability. The limitedness of disability laws has been spoken of in cases where the full realization of rights is subject to technological, philosophical, and market dynamics. In many cases, the law is also weakened by negative cultural beliefs and social perceptions of disability. And then (...) there are cases where disability laws perpetuate or tolerate oppression and violence. Despite their limitedness, disability laws offer normative content to facilitate engagement and critique for reform. In terms of what disability laws ‘ought’ to be, scholars write, that they should be about disabled people and the meanings provided by them. This objective has and can be fulfilled with the aid of disability studies that go beyond the inquiries of law with the right kind of research tools to theorize and re-theorize concepts and meanings about disability. Disability studies, in other words, represent the living conditions of disabled persons and the questions of how disability and/or impairment should be defined. This chapter examines the interaction between disability law and disability studies through the prism of the Convention on the Rights of Persons with Disabilities (CRPD). While discussing the models of disability (medical, social, human rights, and relational-community models) and agendas for reforming the CRPD, the chapter highlights the importance of new concepts and approaches. Further, the potential of disability laws, CRPD in particular, has been discussed keeping in mind the application of its core principles across different sectors (with a special focus on the Marrakesh treaty and copyright laws). (shrink)

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use (...) of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 91-97 [Access article in PDF] The Ambiguities of "Meaning":A Commentary Hans S. Reinders "Death, Disability, and Dogma" by Jennifer Clegg and Richard Lansdall Welfare (2003) is a rich paper that presents an unexpected but interesting mixture of observations and perspectives on mourning, grief and bereavement in the lives of people with intellectual disabilities.In a number of ways, the notion of meaning (...) is prominent in the paper. The authors observe that recent literature on grief and bereavement because of loss of loved ones does not confirm the "stage theory of loss." Instead there is a "multiplicity of possible responses to bereavement," which is partly explained by the role of cultural diversity. Cultural diversity is particularly involved in the development of "meanings" about loss (2003, 69). However, looking into the literature on grief and bereavement among persons with intellectual disabilities, the authors found that literature "dogmatic" in that it sticks to the traditional theoretical framework of "grief work" (2003, 74). The authors offer an explanation for this "stuck discourse": The approach to grief and bereavement among people with intellectual disabilities is framed within the philosophy of normalization. This leads professionals to downplay limitations to the potential of their clients in ways that encourage the denial of disability. The meaning assigned to intellectual disabilities, this is to say, is primarily positive. This positive outlook promotes the "belief in the apparently limitless potential of the client group to develop skills and autonomy if only they are given the right help" (2003, 71). The authors read this promoting of positive meaning as a counter strategy: our culture in general does not seem to be convinced of a valued meaning of life for persons with intellectual disabilities. Therefore, the professional world of service systems adopts a strategy of "separitism" (2003, 77), which explains why approaches to phenomena like grief and bereavement are "stuck" with ideas that are inadequate. The professional community attending those with intellectual disabilities is too much a world on its own. There should be more interaction between generalists and specialists on the subject of grief and bereavement.So far the general argument of the paper. Because my own area of research is not in the fields of clinical psychology or psychiatry, it cannot be my task to comment on Clegg and Lansdall-Welfare's presentation of the research on grief and bereavement in these fields. Nonetheless, there are a few points in their review of the literature that I will briefly address, but only to prepare the way for the major topic of this commentary, which is the issue of meaning as it relates to intellectual disability.Intuitively, my sympathy would lie with social critics arguing for caution with regard to the [End Page 91] medicalization of mourning and grief (Clegg and Lansdall-Welfare 2003, 67-79). The loss of loved ones will oftentimes be a traumatic experience, but when it is, I tend to see the symptoms of distress following that experience as a sign of mental health, more than anything else. Losing a parent, sibling, or someone else who has been part of one's life, is not only missing the other person, it is missing a part of oneself. That being the case, it is only to be expected that, in some sense, life will never be again what it was. Replacing notions of recovery from a traumatic experience by notions of "adaptation and accommodation" (2003, 68) appears to me the more sensible approach.Therefore, I tend to be suspicious about notions such as "pathological grief." From a philosophical point of view, such a notion seems to betray a modernist conception of the human subject in control of its own action. Following that conception, human beings need to transform that which happens to them by means of their own action so that they have made it part of themselves. Being overcome with grief one is in an emotional state that as such is "pathological"—as Immanuel Kant had it—the main characteristic of which is its heteronomy. A person overcome by grief is controlled by passion instead... (shrink)

Background:Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy.Objective:To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy.Setting:Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities.Methods:Ethnographic field study.Ethical considerations:The (...) boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee.Findings:Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.”Conclusion:Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)

Principlism is the approach promoted by Beauchamp and Childress for addressing the ethics of medical practice. Instead of evaluating clinical decisions by means of full-scale theories from moral philosophy, Beauchamp and Childress refer people to four principles—of autonomy, beneficence, nonmaleficence, and justice. Now it is one thing for principlism to be invoked in an academic literature dwelling on a stock topic of medical ethical writing: end-of-life decisions, for example. It is another when the topic lies further from (...) the mainstream. In such cases the cost of reaching for the familiar Beauchamp and Childress framework, with its formulaic set of concerns, may be to miss something morally important. After discussing an example of the sort of academic literature I have in mind, I propose to distinguish the uses of the formulaic from the uses of the more unapologetically theoretical in applied ethics, and to suggest that the latter can make up for some of the limitations of the former. This is not to say that the more theoretical literature has no limitations of its own, or that it should take the place of the formulaic. On the contrary, there is room in applied ethics and a use in applied ethics for both. But there is a sense in which there is a greater dependence of principlism on theory than the other way round, and at the end I try to spell out the significance of this fact. (shrink)

Disabled/“differently abled” persons by virtue of being human have the right to enjoy human rights to life, liberty, equality, security, and dignity. However, due to social indifference, psychological barriers, a limited definition of “disability” entitling protection of law, and a lack of proper data, disabled persons in India remain an invisible category. Although several laws exit to ensure their full and effective participation in society, they remain insufficient as they are primarily based on the government's discretion. At the same (...) time, whenever the judiciary finds an opportunity, it acts as a real protector of disabled persons, but it is not feasible to knock on the door of the judiciary for every request. Interestingly, various civil societies and human rights activists have occasionally asserted the rights of the disabled. However, unless the foundation stones of law are fortified, disabled persons cannot fully realize their rights. It is high time to enact effective laws, with timely implementation, to protect their interests and empower their capabilities that are based on a “rights-based approach” rather than on the charity, medical, or social approaches. Thus, the horizons of law must be expanded to provide a “human friendly environment” for all of the disabled to overcome the barriers that impair their development. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually (...) disabled patients may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

This chapter is devoted to reflecting on the role of empathy in interactions with people with profound intellectual disabilities. We have a duty to respect people with intellectual disabilities. Respect involves identification with a point of view. We owe them an effort at identification with their perspective. However, if intellectually disabled people’s communicative abilities are impaired, our apprehension of their point of view might be limited, reducing our ability to identify with them and respect them. To answer (...) this challenge, I appeal to empathy. Through imaginative empathy, we can learn to identify with their perspectives. I argue that empathy is a good moral guide and can be helpful in developing respectful attitudes toward people with profound intellectual disabilities. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on (...) what social inclusion for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

Medical decision-making on behalf of intellectually and developmentally disabled (IDD) patients amounts to a critical challenge, one which has been widely discussed by bioethicists, medical, and le...

Despite the now considerable literature on intellectual virtue, there remains relatively little philosophical discussion of intellectual vice. What discussion there is has been shaped by a powerful assumption—that, just as intellectual virtue requires that we are motivated by epistemic goods, intellectual vice requires that we aren't. In this paper, I demonstrate that this assumption is false: motivational approaches cannot explain a range of intuitive cases of intellectual vice. The popularity of the assumption is accounted for (...) by its being a manifestation of a more general understanding of vice as an inversion or mirror image of virtue. I call this the inversion thesis, and argue that the failure of the motivational approach to vice exposes its limitations. I conclude by suggesting that recognizing these limitations can help to encourage philosophical interest in intellectual vice. (shrink)

Respect for autonomy grounds common ethical judgments about why people should be allowed to make decisions for themselves. Under this assumption, it is concerning that a number of feminist conceptions of autonomy present challenges for people with intellectual disabilities. This paper explores some of the most philosophically influential feminist accounts of autonomy and demonstrates how these accounts exclude persons with intellectual disabilities. As a possible solution to these accounts, Laura Davy’s inclusive design approach is presented, which is (...) a revised conception of autonomy that accommodates intellectual disabilities. While Davy’s approach to autonomy views people with intellectual disabilities as autonomous, it encounters limitations in regard to sexual autonomy, which incorporates certain judgments that are intuitively at odds with her recommendations. The remainder of this paper describes some complexities of sexual autonomy and determines why these are problematic for Davy’s account. After analyzing some of the challenges that sexual autonomy presents, I suggest a potential modification for consideration. This modification will allow Davy’s account to address the topic of sexual autonomy for persons with intellectual disabilities. My proposal is a matter of theory following practice. (shrink)

Clinical research is a necessity if effective and safe treatments are to be developed. However, this may well include the need for research that is best described as ‘invasive’ in that it may be associated with some discomfort or inconvenience. Limitations in the undertaking of invasive research involving people with intellectual disabilities (ID) are perhaps related to anxieties within the academic community and among ethics committees; however, the consequence of this neglect is that innovative treatments specific to people (...) with ID may not be developed. Such concerns are likely to continue while there is limited published knowledge regarding the actual experiences of people with ID who have participated in invasive clinical research. As part of a pilot study trialling the novel use of a surgically inserted device to curb overeating in people with Prader–Willi syndrome (PWS) we have investigated the experience of research through semistructured qualitative interviews involving three participants and their carers. Thematic analysis revealed that the adults with PWS and their family carers rated their participation positively, seeing it as a rewarding and enriching experience. This brief report discusses findings from our interview data in order to highlight strategies which may ensure that research is acceptable to participants, meets the necessary ethical standards and is able to achieve the aims set out by the researchers. To our knowledge, this is the first study to record experiences directly from people with PWS and their carers regarding their involvement in invasive clinical research. (shrink)

This article adopts Husserl’s transcendental phenomenology to explore the complex relationship between patients and physicians. It delves into the coexistence of two distinct voices in the realm of medicine and health: the “voice of medicine” and the “voice of life-world.” Divided into three sections, the article emphasizes the importance of shifting from a scientific-medical attitude to a more personalistic approach in physician–patient interactions. This shift aims to prevent depersonalization and desubjectification. Additionally, it highlights the equal and irreducible nature (...) of patients while acknowledging the vital role physicians hold in the realm of illness. The article stresses the need for a balanced and equitable relationship between both parties, rooted in the shared life-world. Moreover, empathy is underscored as a crucial element in fostering meaningful dialogue, wherein understanding diverse perspectives and attitudes towards illness is paramount. The article argues that differences between patients and physicians are necessary for empathy, while shared similarities form its foundation. Ultimately, a harmonious relationship facilitates empathy and enables the constitution of a new sense of life for both patients and physicians. (shrink)

While copious quantities of ink have been spilled on the topic of autonomy in the context of health care, little has been written about autonomy in relation to intellectual disability. After presenting the received account of capacity, we argue that it cannot account for the moral permissibility of limiting an individual with intellectual disability’s access to diet soda. In cases of preventative medicine and intellectual disability, the philosophical motivation for the received account of capacity (...) is incompatible with the actions it recommends. We consider and reject several potential solutions; then, drawing on applied behavior analysis and the phenomenon of automatic reinforcement, we propose our own solution. The article concludes by considering the broader implications of our discussion. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 87-89 [Access article in PDF] Death, Disability, and Dialogue Gerald Casenave IN THEIR INSIGHTFUL and constructive review, "Death, Disability, and Dogma," Jennifer Clegg and Richard Lansdall-Welfare manage to create the very dialogue that they argue is lacking. Their contention is that the lack of dialogue between different realms of discourse has led to rigid service response by caregivers that attempt to (...) address losses experienced by individuals with intellectual disabilities. They argue that this situation arises because of the complexity of the cultural meaning of death and the uncertainty of the meaning for individuals with intellectual disabilities.Their essay, in itself, is powerfully cross-disciplinary. They review the concept of bereavement from different perspectives: social science research, psychiatric practice, and underlying cultural meanings. This review indicates that social science research has moved from attempting to develop definitive statements about the meaning of death. From their review, it is possible to discern that there may have been an underlying positivist orientation that assumed that a univocal meaning to the loss experience can be discovered. But the only universal fact about death is that there is a loss. It is a significant life event. Going all the way back to the early work of Holmes and Rahe (1967), it is clear that the impact and meaning of the same life event varies from individual to individual. There are multiple layers of meaning that include at least one's larger culture, subgroup values, family meaning, and finally individual interpretation. Clegg and Landsdall-Welfare see the current findings of social science as pointing to the need to be sensitive to the meaning of the death event for the specific individual. It appears to be inappropriate to impose normative stages onto an individual's grief experience.The finding from the review of psychiatric investigation of loss experiences is that bereavement can contribute to health problems. The loss experience is not necessarily pathologic. This compares to the acknowledgement that depression and anxiety are not necessarily illnesses to be treated, but basic human coping mechanisms that can become problematic. Similarly, the loss experience can be a traumatic experience with negative health implications.Clegg and Landsdall-Welfare acknowledge the limited nature of their review of the role of culture in the meaning of the loss experience. But even so, it is clear that the larger cultural context contributes critically to the individual's experience of loss. Oversimplification and reductionistic approaches to the death experience result in insensitive, stereotypic, formulaic, and consequently unsuccessful intervention strategies.The problem, as Clegg and Landsdall-Welfare see it, is that these discoveries and insights have not been effectively integrated into the discourse about and interventions for loss experiences for individuals with intellectual disability. This failure has occurred because of the strong continued [End Page 87] effect of the normalization orientation in the field of intellectual disability and vulnerability of the meaning of life for individuals with intellectual disability.They caution against hasty attempts to integrate the insights on loss from various sources into the discourse on bereavement in the field of intellectual disability. They cite the fragility of meaning of life for individuals with intellectual disability. This fragility leaves them vulnerable to being overwhelmed by the larger discourse with a resulting loss of identity. Their brief mention at the conclusion of their essay of other contested concepts in other clinical services gives rise to thinking further.Clearly, the fundamental challenge for any discussion of the meaning of a loss experience is the complex nature of our understanding of death. First, there are problems with basic definitions of death from the perspective of science. But from an intervention and treatment perspective, the greatest problem has to do with our larger cultural discomfort in even discussing death and loss. The issue of intervention concerning loss for a specific population, such as those with intellectual disability, is in part only a reflection on our confusion concerning intervention in loss for any person, regardless of their disability status. Here again is confirmation of fundamental likeness across individual differences. This is not to be confused with normalization; rather, it... (shrink)

Intellectual property has traditionally been a matter for the legal professions, but with the shift to evidence-based policy, the global economic upheaval, and the advent of the digital age, intellectual property is increasingly informed by economic perspectives. This book is a comprehensive, critical analysis of economic interpretations of intellectual property, written for researchers, practitioners and policymakers. It analyses the interface between economics, finance, accountancy and intellectual property law. Commencing with a critical analysis of the economics of (...) innovation, law, industrial organisation and welfare, the book then critiques the economics of specific intellectual property rights, including copyright, patents, trade marks, geographical indications and design rights. It further assesses the interaction between economics, IP and competition. Finally, it examines why, when and how IP generates value, reviewing contemporary approaches to valuation and accounting, and the emerging use of IP to facilitate business finance. This analytical text offers readers a better understanding of IP's contribution to macro- and microeconomics, as well as insights that inform the debate on evidence-based IP policy. (shrink)

The revision of the Council of International Organizations of Medical Sciences (CIOMS) International ethical guidelines for health‐related research (2016) heralds a paradigm shift from the ‘protectionist’ policies that emerged following historical research atrocities of the 20th century, towards a more nuanced and inclusive approach to research participation. Adopting this modified approach will enable countries to secure the benefits of research for individuals and for society as a whole, while at the same time minimizing the potential for exploitation (...) and research‐related harms. This article considers the potential impact of Guideline 16 of the CIOMS 2016 from a New Zealand perspective, with respect to research involving adults with impaired capacity and who are incapable of giving informed consent. While the CIOMS 2016 apply a ‘minimal risk’ threshold to guide research involving adults who lack capacity to consent, New Zealand law currently adopts a ‘best interests’ standard which significantly restricts the scope of permissible research that may be performed in this context. This article argues that the CIOMS 2016 should influence change to New Zealand’s legal framework for ethical review of research. CIOMS 2016 provides useful guidance for the necessary standards and processes to enable the responsible and ethical inclusion of adults with impaired capacity in research. (shrink)

Many studies have emphasized the importance of medical, insurance, and workplace systems treating individuals fairly in work disability prevention and return-to-work. However, ethical theories and perspectives from these different systems are rarely discussed in relation to each other, even though in practice these systems constantly interact. This paper explores ethical theories and perspectives that may apply to the WDP–RTW field, and discusses these in relation to perspectives attributed to dominant stakeholders in this field, and to potential differences in (...) different jurisdictional contexts. Literature was sought primarily in biomedical ethics, business ethics, and public administration ethics. In biomedical ethics, four ethical principles are dominant: autonomy, beneficence, nonmalevolence, and justice. Business ethics involve theories on Corporate Social Responsibility, social contracts, and organizational justice. Public administration ethics focus on constitutional theory, citizenship, social equity, virtue, and public interest. Several concepts were identified as relevant for ethical analyses in the WDP–RTW field, including justice; individual autonomy; nonmalevolence; economic and social responsibility; and social contracts. These concepts provide a vocabulary that may be used to analyze stakeholders’ actions and interactions in RTW processes. It was also noted how the power balance between stakeholders will influence which ethical perspectives will influence RTW. Jurisdictional differences that influence RTW processes with regard to stakeholder responsibilities were identified, as well as varying beliefs as to who is the client in different compensation systems. A social contractual approach may inform an analysis of cultural and legal differences. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that (...) values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Drawing on the built environment concept of “inclusive design” and its emphasis on creating accessible environments for all persons regardless of ability, I suggest that a central task for feminist disability theory is to redesign foundational philosophical concepts to present opportunities rather than barriers to inclusion for people with disability. Accounts of autonomy within liberal philosophy stress self-determination and the dignity of all individual persons, but have excluded people with intellectual disability from moral and political theories (...) by denying their capacity for individual autonomy, seen as a chief marker of moral personhood. This paper modifies and extends feminist theories of relational autonomy by arguing for the need to view autonomy as a feature of persons that is manifested only through relations of support, advocacy, and enablement. An “inclusively designed,” relational account negotiates the tensions encountered in attempts to apply autonomy to people with high support needs, and politicizes the concept as an advocacy tool for people with intellectual disability and their allies. (shrink)

I explore the usefulness of Martha Nussbaum's capabilities approach in regard to the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims at empowering people with disabilities by granting them a number of civil and political, but also economic, social and cultural rights. Implementing the CRPD will clearly be politically challenging and also very expensive for states. Thus, questions might arise as to whether the requirements set in the CRPD can be justified from an ethical (...) perspective. I will first investigate if Nussbaum's capabilities approach provides support for the rights claimed in the CRPD. Second, I will investigate to what extent Nussbaum's capabilities approach is a useful tool to set priorities among rights in the course of the implementation of the convention. This is an urgent question because seen realistically, it will not be possible to realize all rights at once and thus some rights need to receive greater priority than others. I will argue that the capabilities approach can be regarded as supporting the rights specified in the CRPD, but that it proves unable to guide the implementation process due to an insufficient grounding of the capabilities. Employing the capabilities approach thus leads to only limited results. (shrink)

The rapid advancement of artificial intelligence systems has generated a means whereby assistive bionic prosthetics can become both more effective and practical for the patients who rely upon the use of such machines in their daily lives. However, de lege lata remains relatively unspoken as to the legal status of patients whose devices contain self-learning CIS that can interface directly with the peripheral nervous system. As a means to reconcile for this lack of legal foresight, this article approaches the topic (...) of CIS-nervous system interaction and the impacts it may have on the legal definition of “persons” under the law. While other literature of this nature centres upon notions of transhumanism or self-enhancement, the approach herein approached is designed to focus solely upon the legal nature of independent CIS actions when operating alongside human subjects. To this end, it is hoped that further discussion on the topic can be garnered outside of transhumanist discourse to expedite legal consideration for how these emerging relationships ought to be received by law-generating bodies internationally. (shrink)

End-of-life care is the only major reference to systematically explore the unique medical, social, legal, political, and ethical issues to consider while providing care to adults and children with intellectual and developmental disabilities who are facing terminal illness or life-limiting conditions.

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a (...) medical model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. (shrink)

A French secondary school teacher is committed to the inclusion of adolescents with intellectual disabilities, and aligning her beliefs with her inclusion practices is by no means obvious. She nevertheless succeeds with the support of a school adaptation system at her college, and the results of our field survey, which took the form of a socio-anthropological approach centered on the case study, help to better understand how and why the support she receives from this system allows her to (...) align her beliefs and practices in terms of inclusion. Her beliefs about the education of adolescents with intellectual disabilities are identified, and her practices and the support she receives from the ULIS system are described, and related to her beliefs about inclusion.Our results, which are based on the articulation of three theoretical approaches (multidisciplinary analysis of work situations, clinical activity and constructive ergonomics) allow, in the context of this case study, to better understand the construction of a link between beliefs and practices, but nevertheless questions the support provided by this device for the inclusion ofFrench teachers in the inclusive paradigm. (shrink)

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a (...) class='Hi'>disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals. (shrink)

The nonconsequentialist revival in tort theory has focused almost exclusively on one issue: showing that the rules governing compensation for acts reflect corrective justice rather than welfarist norms. The literature either is silent on what makes an act wrongful in the first place or suggests criteria that seem indistinguishable from some version of cost/benefit analysis. As a result, cost/benefit analysis is currently the only game in town for determining appropriate standards of conduct for socially useful but risky acts. This is (...) no small omission, and the failure of nonconsequentialists to acknowledge it or cure it can be traced to a number of recurring problems in the nonconsequentialist tort literature. Chief among them is the tendency to conflate prohibition and compensation, and to treat imposition of risk and imposition of harm as if they were distinct forms of conduct rather than the same conduct viewed from different temporal perspectives. (shrink)

There is a clear and controlling philosophical concern that governs Ralph Waldo Emerson’s essays: freedom from limitation and self-reliance from external authority. What makes it difficult to understand his essays, however, is his style, which is characterized by disconnection, paradox, and negation. These rhetorical techniques make the meaning of his writings elusive and slippery. Though many scholars have analyzed Emerson’s style, none have approached it through the writings of Laozi, an ancient Chinese philosopher. There are two reasons I compare Emerson (...) and Laozi. First, in spite of their differences, there are important parallel themes and stylistic innovations in their writings. Second, attentiveness to a key figure in the Eastern philosophical tradition can help to explain how Emerson’s thoughts disappoint Western readers, precisely because they employ techniques beyond the method of habitual intellect in the Western frame. This essay tries to approach several features in Emerson’s writing style from a Daoist perspective to show that both philosophers purposefully use linguistic strategies such as disconnection, paradox, and negation to provoke readers into participating in understanding truth, instead of telling them directly what truth is. (shrink)

Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. This book explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous research participant may have significant (...) bearing on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. This book also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. (shrink)

Who should be diagnosed with intellectual disability and who should not? For borderline cases, the answer to this question may be as difficult to decide on as determining the borderline between being bald or not. While going bald may be upsetting to some, it is also an inevitable and relatively undramatic course of nature. In contrast, getting a diagnosis of intellectual disability is likely to have more far-reaching consequences. This makes the question of where the cutoff (...) point for intellectual disability lies more imperative. Philosophy of science may help psychologists to understand the nature of this dilemma in a more profound manner. This article builds on the sorites paradox to explore the vagueness that surrounds the concept of intellectual disability and the consequences of this vagueness for the diagnostic process. While epistemicists argue that vagueness is a consequence of our limited knowledge of the world that we live in, semantic theorists claim that there is nothing that we do not know, but that our language allows for indecisiveness. What these different lines of understanding mean for psychologists who are diagnosing intellectual disability, is described in this article. Furthermore, the article discusses practical implications of these philosophical underpinnings. (shrink)

Nowadays ethics plays a vital role in numerous professions. Due to social requirements and technical advances, changes in the accreditation rules in legal, economic, medical and engineering education have emerged in many countries, often requiring the inclusion of an ethics requirement in such professional programmes. In this work, the authors demonstrate that such changes are absolutely necessary in the legal profession in Lithuania. Specifically, the record low level of prestige of the judiciary and lawyers in the Lithuanian society and (...) the fact that lawyers are often accused of legal nihilism, clannish behaviour, and protectionism, demand that legal ethics assumes a far greater role in Lithuanian legal education. It is necessary to stress that the topic of lawyers’ ethical violations and the consequences of such violations is discussed in the society in only in a fragmentary, and not transparent manner; moreover, the significance of ethics in the education and training of lawyers has not been properly evaluated either. Especially having in mind Lithuania’s Soviet heritage (during most of the Communist era there was almost no education on those issues), it becomes obvious that legal ethics must be continuously stressed in the legal profession’s education and development. The importance and relevance of this topic is primarily determined by the current evaluation of lawyers in Lithuania, which shows that lawyers do not fulfil the expectations of the society. This raises a question whether law graduates indeed acquire this system of ethical values as part of the process of obtaining the knowledge and skills that are necessary for a modern lawyer. While analysing the Lithuanian legal documents governing the requirements for legal studies, it has been noticed that a course in legal ethics or lawyer’s professional responsibility is not compulsory either in the qualification requirements for judges, or in the Ruling of the Constitutional Court of 20 February 2008 on legal education for those who want to assume the position of a judge according to the order of law. In the description of legal study programmes, courses on professional ethics are designated as an optional non-legal subject, which is quite different from the legal education systems of other countries, where this type of course is compulsory for future lawyers. Even if this course is taught at Lithuanian higher education establishments, it is limited to the analysis of cases and legal regulation. Insufficient attention to this issue obviously creates the erroneous impression that it is of secondary importance for a lawyer. It should be noted that legal ethical standards, the development of lawyers’ value systems and other problematic questions related to legal ethics have not attracted attention of the Lithuanian scholars either. Therefore, this is a question of the utmost importance for legal education and requires additional research. In global educational and other academic literature, much is being discussed about the methods of teaching ethics, and the place of ethical subjects in study programmes and assessment. It is well worth supporting the research on the development of lawyers’ value systems, in that the lack of such values may influence the evaluation of the practicing lawyers’ satisfaction with their job, self-confidence and belief in the importance of their profession. Obtaining social-ethical attitudes and perspectives helps future lawyers gain more trust in their professional identity and the correctness of their professional work. The main conclusions drawn from the research are the following: (1) the university can and needs to contribute to the development of students’ value systems and this is one of the most important content requirements within the legal study programmes; (2) while teaching ethics, the primary focus must be not on the legal acts regulating ethics, which are changing over time, but on the aim of helping that students themselves have an increased sense of selfawareness and sensitivity to ethical issues in law practice, recognise and understand ethical dilemmas arising in the law, recognise the dominant attitudes in the society towards the role of a lawyer and motivate them to reconsider and discuss the value bases of such attitudes and their change; (3) a course on legal ethics – no matter how perfect it would be – is not the only way to develop a personal value system. In this context, the importance of liberal arts education should be accentuated. Given the research conducted, there is a clear link between the development of moral awareness and the person’s education in general. (shrink)

Events such as industrialization, population growth and old age have made the disability more visible. We think that the disabled people's attitude towards being disabled and religion is an important issue to be investigated in terms of formation of the social sensitivity about the learning of the thoughts of disabled people. In this context, it is aimed to investigate the function of the religion in terms of how the disabled identify, understand and overcome the problems related to being disabled. (...) The sample of the study consisted of 58 people, 20 (34.5%) female and 38 (65.5%) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be understood in terms of sociology of religion in the context of functionalist approach. In general, disabled people evaluate disability (81.1%) as "examination", (10.3%) as "problem" and (8.6%) as "difference”. It is concluded that religion affects the thoughts of disabled person in a positive way to understand and accept the disability. It has been seen that the disabled people have applied to the state, social support systems and spiritual values ​​to overcome their problems. However, it is the duty of all social institutions to increase the social sensitivity to the disabled people.Summary: Events such as industrialization, population growth and old age have further increased disability. It is important that the social sensitivity towards disabled people and disabled people’s thoughts about disability should be learned. We think that the disabled people's attitude towards being disabled and towards religion is an important issue to be investigated. In this study, the functions of religion to overcome the problems related to the disability and the way how the disabled people define and understand the disability will be investigated. In this context, we think that an individual's overcoming the problems related to disability is an important issue that should be examined in terms of religion-referenced behavior.The sample of the study consisted of 58 people, 20 (34.5 %) female and 38 (65.5 %) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be perceived in terms of sociology of religion in the context of functionalist approach.It is a fact that various approaches to disability in various societies have been made during the historical process. These approaches are known as moral, medicinal/medical, social, human rights and limitative models. Each of these approaches points to a specific direction and problems of disability. In other words, each model handles and predicts a different dimension of the subject.According to the Qur’ân, disability means not to be in a bodily sense, but to stay away from the truth and expressed in the way of not seeing the truth, not grasping and not hearing, that is, figuratively meaningful. Again from the point of view of the Qur’ân, the first cause of disability comes to people through the divine will and test. The others are due to people's own mistakes.The changing paradigm shift with the enlightenment process has changed the way people view each other. In this context, with the thought and modernization of enlightenment, people's view of human beings and environment has changed. The body which is thought as the trust of God has turned into a body in which one is his proprietor. Therefore, this situation brought the contest, the debate, the comparison and the alienation together.Today, people with disabilities face many financial, spiritual, social and cultural problems. Poverty arising from unemployment, livelihood, accommodation constitute financial problems that are the first to come to mind; access to places of worship, instruction of worship, fulfillment of worship, lack of spiritual care and support constitute spiritual problems; education, health, access and social exclusion constitute social and cultural problems.Disabled people ask themselves these questions related to disability: Why did it happen to me? If it is a test, why do not I start the test on equal conditions with healthy people? Here the disabled person consults the religion to understand and find an answer to the situation that he is in. Because religion is an important factor that responds to the search for meaning, it reduces the feeling of deprivation, and fulfills the task of compensation mechanism. In addition to this, religion gives life a goal and power to the person to overcome the problems he encounters with.In our research on the relationship between disability and religion, religion as in many subjects has contributed positively to the individual’s view towards the fact of disability and to overcome some problems. For example, as a result of the research, the participants evaluated "disability" (81.1 %) as ‘test’ (10.3%) as ‘problem’ and (8.6 %) as ‘difference’.They answered the question ‘How has the disability affected your religious thoughts?’, 71% of the participants expressed that it has affected in a positive way (as a test, made me closer to God, increased my loyalty to God, a motivation source). Besides, 23 % of the participants expressed that it hasn't caused any changes (already believed, fate, disability isn't an obstruct to worship) and 6 % of the participants expressed that it has affected in a negative way (my life is upside down, I am questioning this situation).In addition to those who answered the question ‘Has the disability affected your life?’ in a ‘positive’ way, there is a considerable amount of people who said that the entrances of the mosques are not suitable for the disabled people. In addition, the disabled people stated that they have problems with the way of worshipping (orthopedically disabled), listening to the Qur’ân, hearing the azan (hearing impaired), and cannot go to the mosques and cannot fast because of the health problems, all of which have affected their religious life in a ‘negative’ way. We can gather the answers given to the question in three categories about what kind of behaviors the disabled people do to overcome/eliminate problems. The first is that they receive a variety of services and assistance by applying to the state for material support in order to overcome the problems related to disability and the second is that the social support services are mainly given within the family and friends, and the third is they worship, pray and fast, which are must of Islam, to eliminate the spiritual distress.The rate of people, whose answers are ‘positive’ to this question ‘Does your religious belief have an effect to deal with the disability?’ because they believe the afterlife and who say they feel relieved by praying and worshipping, is very high (95%). Moreover, it is remarkable that the ones say they are ‘not positive’ still explain this with religious concepts such as test and examination which require patience. In short, religion relieves disabled people by fulfilling the task of compensation mechanism with understanding disability and overcoming problems.Almost half of the participants (45%) said no to the following question: Is there any kind of material/spiritual support given to you by the religious officials or religious people in your community? Some factors affecting this situation are that religious officials have no knowledge and education about how to treat disabled people and how to help them.As a result, disabled people face various financial and spiritual problems. They consult religion to solve some of these problems. The vast majority of the disabled consider disability as a test and a fate. Therefore, religion plays an important role for disabled people to understand disability and cope with it. Besides, disabled people have stated that they face various problems in fulfilling their worship and in accessing the places of worship. In this context, physically disabled people also need the supportive power of religion just like other disabled people. (shrink)

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse (...) off, apart from a non-accommodating environment; (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

BackgroundThe principal aim of this study was to investigate the function and effectiveness of an institutional policy that outlines a procedure to limit medically futile interventions. We were interested in the attitudes and opinions of careproviders and the members of the Yale New Haven Hospital Ethics Committee that use this policy, the Conscientious Practice Policy (CPP), to address questions on appropriate interventions in the setting of medical futility.MethodsIn 2019, we conducted three focus groups of members of the Yale New (...) Haven Hospital Ethics Committee and critical care physicians. We asked the participants questions concerning their use of the Yale New Haven Hospital’s policy on limiting futile interventions. Focus group transcript results were coded into common themes using a conventional analysis approach.ResultsThe overarching finding was that the CPP had various levels of interpretation that prevented its effective and consistent use. This was supported by the four main themes from the focus groups: (1) Mixed perceptions regarding communication between careproviders and family members and surrogates before the CPP was invoked contributed to complexity in decision making. (2) It was ineffective to use an ethics consultation to decide whether or not to invoke the CPP. (3) It was necessary to address moral distress in the absence of a policy. (4) The use of the CPP was inconsistent for different patients, based on the degree to which family members and surrogates persisted in their resistance to limiting medically futile interventions, careproviders’ comfort with directly making decisions, and bias towards members of certain groups.ConclusionThe CPP, as it has been used at the Yale New Haven Hospital, has been ineffective in rationally, fairly, and consistently resolving conflicts regarding the appropriateness of ending medically futile interventions. The CPP, as well as similar policies at other institutions, may benefit from restructuring the policy to more closely align with policies at other institutions where outcomes have been more successful. (shrink)

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should (...) intellectual disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (shrink)

Experiential imagination consists in an imaginative projection that aims at simulating the experiences one would undergo in different circumstances. It has been traditionally thought to play a role in how we build our lives, engage with other agents, and appreciate art. Although some philosophers have recently expressed doubts over the capacity of experiential imagination to offer insight into the perspective of someone other than our present-selves, experiential imagination remains a much sought-after tool. This paper substantiates pessimism about the epistemological (...) value of these uses of experiential imagination by developing an embodied approach. Our thesis is that experiential imagination is _robustly embodied_ because the _sociohistorically situated_ body makes an irreducible contribution to the imaginative project, and that, as such, it is constrained by who we are as _concrete_ agents. We argue that experiential imagination is an embodied, virtual exploration of imagined scenarios that depends on our situated history of sensorimotor and affective interactions. We conclude that experiential imagination is much more limited than commonly acknowledged, as it can hardly be divorced from who we are and where we have been. (shrink)

In this paper I explore the concept of tolerance and suggest a description of that concept that could be accepted regardless of the political theory one supports. Since a neutral perception of the limits of tolerance is impossible, this paper offers a guideline for a substantive-liberal or a perfectionist-liberal approach to it. The limits of tolerance are described through the principles of reciprocity and proportionality. The former explains why intolerance should not be tolerated whereas the latter prescribes how and (...) to what extent it should be tolerated. The cumulative effect of these principles is that apart from extremely rare occasions intolerance should not be tolerated at any time. (shrink)

This is a book about the theory of the city or commonwealth, what would come to be called the state, in early modern natural law discourse. Annabel Brett takes a fresh approach by looking at this political entity from the perspective of its boundaries and those who crossed them. She begins with a classic debate from the Spanish sixteenth century over the political treatment of mendicants, showing how cosmopolitan ideals of porous boundaries could simultaneously justify the freedoms of (...) itinerant beggars and the activities of European colonists in the Indies. She goes on to examine the boundaries of the state in multiple senses, including the fundamental barrier between human beings and animals and the limits of the state in the face of the natural lives of its subjects, as well as territorial frontiers. Drawing on a wide range of authors, Brett reveals how early modern political space was constructed from a complex dynamic of inclusion and exclusion. Throughout, she shows that early modern debates about political boundaries displayed unheralded creativity and virtuosity but were nevertheless vulnerable to innumerable paradoxes, contradictions, and loose ends.Changes of State is a major work of intellectual history that resonates with modern debates about globalization and the transformation of the nation-state. (shrink)