The concept of guardianship, its associated principles, distinctions, and articulation of the legal needs of the elderly are introduced via a review of well-canvassed criticisms of Canadian guardianship legislation. Claims that the reformed legislation of Alberta, Quebec, and British Columbia represent models of adequate adult guardianship compared with traditional (archaic lunacy) law are examined. This paper argues that these renovated models exhibit a dubious normative advance over traditional legislation. Specifically, the normative presuppositions of the reformed legislation, such (...) as, restriction to an autonomy-paternalism framework, and the norms of the liberal individual and state, obscure important issues in at least two key areas which challenge the models' assumptions; namely, assessment and legal competence and assessment and need. The development of guardianship laws and of social arrangements that are more responsive to the life experiences of the elderly requires critical re-articulation of the nature of individuals and their communities. (shrink)

When ethics committees are consulted about patients who have or need court-appointed guardians, they lack empirical evidence about several common issues, including the relationship between guardianship and prolonged, potentially medically unnecessary hospitalizations for patients. To provide information about this issue, we conducted quantitative and qualitative analyses using a retrospective cohort from Veterans Healthcare Administration. To examine the relationship between guardianship appointment and hospital length of stay, we first compared 116 persons hospitalized prior to guardianship appointment to a (...) comparison group (n = 348) 3:1 matched for age, diagnosis, date of admission, and comorbidity. We then compared 91 persons hospitalized in the year following guardianship appointment to a second matched comparison group (n = 273). Mean length of stay was 30.75 days (SD = 46.70) amongst those admitted prior to guardianship, which was higher than the comparison group (M = 7.74, SD = 9.71, F = 20.75, p. (shrink)

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability to (...) interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

Hastings Center Report, Volume 52, Issue 2, Page 4-6, March‐April 2022.

The purpose of this study is to extend and replicate previously published results from a random probability sample of university faculty. The sample assessed reasons given for companion-animal guardianship and for belief in the beneficial health effects of owning pets. In this replication and extension design, these two non-random samples responded to the same questionnaire items as those addressed to university faculty. Results indicated that avoidance of loneliness was the most frequent reason for owning pets among both students and (...) middle-aged community members. This result is consistent with the view that animals provide social support and companionship to humans at various stages of the life cycle. Suggesting an emergent feature of the human-nonhuman animal bond, both groups selected, “the pet helps keep me active” as the second-most common reason. Older women reported a greater belief in the health-giving benefits of pet ownership than did younger persons or men. This belief may contribute to human benefits of pet ownership and requires further research. (shrink)

This article shows how state guardianship law can provide a mechanism for courts to reduce gun violence by removing the right to possess firearms from individuals found, after hearing and due process, to be incapable of safely possessing them. It explores how this often overlooked body of law not only complements extreme risk protection orders where they exist, but can also be used to accomplish a portion of what such orders are designed to do in states that have not (...) authorized them. It concludes by suggesting some modest adjustments to guardianship law and practice that would help ensure that guardianship systems interventions in this arena are fair and effective. (shrink)

McGovern, Kevin The Victorian Law Reform Commission's Report on Guardianship contains many findings and recommendations about Advance Care Planning. This article considers the most significant of these from the perspective of the teaching of the Catholic Church.

Recent scientific studies suggest that the destabilisation of the earth's climate and biodiversity loss are not separate, but interdependent phenomena. In this context, some have proposed the creation of a ‘Global Safety Net’ of ecoregions that should be preserved to stop further biodiversity loss, preventing at the same time the growth of CO2 emissions produced by deforestation and allowing natural carbon removal. In this article, I suggest that a first step to achieve this might be to replace permanent sovereignty over (...) natural resources in these areas with permanent guardianship. I propose to take some inspiration from a model that has already been implemented over an entire continent with a fair degree of success. In 1959, the Antarctic Treaty froze the sovereign claims of seven countries over Antarctica. However, these countries plus 47 others today have been remarkably successful at jointly preserving the continent for peace, science, and the protection of the environment, especially since the signature of the Environmental Protocol in 1991. After outlining some principles that could give form to a Global Environmental Protocol for Ecoregions, I address a series of objections and offer some concluding remarks. (shrink)

Objectives: To analyse and compare the surveys on German doctors and judges on end of life decision making regarding their attitudes on the advance directive and on the dying process.Design: The respondents were to indicate their agreement or disagreement to eight statements on the advance directive and to specify their personal view on the beginning of the dying process.Participants: 727 doctors in three federal states and 469 judges dealing with guardianship matters all over Germany.Main measurements: Comparisons of means, analyses (...) of variance, pivot tables and factor analyses .Results: Three attitude groups on advance directive were disclosed by the analysis: the decision model, which emphasises the binding character of a situational advance directive; the deliberation model, which puts more emphasis on the communicative aspect; and the delegation model, which regards the advance directive as a legal instrument. The answers regarding the beginning of the dying process were broadly distributed, but no marked difference was observed between the responding professions. The dying process was assumed by most participants to begin with a life expectancy of only a few days.Conclusions: A high degree of valuation for advance directive was seen in both German doctors and judges; most agreed to the binding character of the situational directive. Regarding the different individual concepts of the dying process, a cross-professional discourse on the contents of this term seems to be overdue. (shrink)

Constellations, Volume 29, Issue 1, Page 19-33, March 2022.

In this paper, I cover some ideas first developed during a research year that took me, among other countries, to Bulgaria, where I enjoyed a Fulbright scholarship in 2018–2019. At a conference in Plovdiv (ancient Philippopolis), I gave a talk entitled ‘Neither Clash Nor Dialogue: We Are Each Other's Guardians’.2 A journalist in the audience became irritated and asked me, ‘What do you mean by “neither/nor”? What else is there?’ I answered that the explanation was in the subtitle ‘We Are (...) Each Other's Guardians’. It proposes a third course, one resting on the notion of ‘guardianship’ – as a moral obligation. In what follows, I elaborate further on this concept by relating it to the notion of hospitality, not the Derridian variant, but one that is conceptualized as a transformative event for both the host and the guest, which is why I call it ‘deep hospitality’. (shrink)

This book attempts to link ecology, philosophy, and theology through an exploration of a new model of intercultural dialogue. Case studies provide practical and theoretical applications, which lead to a deeper understanding of not only environmental guardianships but also the fundamental relationship between human beings and nature's being.

A pilot study examined the relationship in daily life between companion animal guardianship and peoples' laughter. The study divided participants into 4 mutually exclusive groups: dog owners, cat owners, people who owned both dogs and cats, and people who owned neither. For one day, participants recorded in "laughter" logs the frequency and source of their laughter and the presence of others when laughing. Dog owners and people who owned both dogs and cats reported laughing more frequently than cat owners, (...) as did people who owned neither. The most frequent source of laughter was spontaneous laughter resulting from a situation. People who owned both dogs and cats reported most frequent spontaneous laughter resulting from an incident involving a pet. Dog owners reported less; cat owners, the least. Dog owners and people who owned both dogs and cats reported laughing more frequently in the presence of their pets than did cat owners. Findings suggest a complex relationship between pet ownership and laughter. Dogs may serve as friends with whom to laugh or their behaviors may provide a greater source of laughter. (shrink)

Definition of the problem The reform of German guardianship law coming into force in 2023 will remove the term “well-being” from the law. This is intended to emphasise that the legal guardian should be guided by the subjective wishes of the person rather than by an objective understanding of well-being. This article analyses the understanding of well-being underlying the reformed guardianship law in comparison to common conceptions of well-being in philosophy and medical ethics, aiming to promote interdisciplinary understanding (...) between ethics and law. Arguments The justification for the reform emphasises that the law is based on a subjective understanding of well-being. However, this understanding does not correspond to philosophical subjective theories of well-being, according to which only things that a person desires can contribute to her well-being. In contrast, the guardianship law assumes that the fulfilment of certain wishes can lead to objective harm to the person and thus impair her well-being. Negative consequences for the objective well-being of a person are only relevant insofar as they indicate a limit to following current wishes that are based on a natural will and are not an expression of self-determination. Conclusion While the term “well-being” is removed from reformed guardianship law, the law implicitly contains an understanding of well-being comparable to a hybrid conception of well-being from a medical ethics perspective. According to this conception, fulfilment of a person’s wishes generally contributes to her well-being, although certain objective criteria are also taken into consideration. (shrink)

Objectives: To explore mental health service users’ views of existing and proposed compulsory powers.Design: A qualitative study employing in-depth interviews. Participants were asked to respond to hypothetical questions regarding the application of compulsory powers under the Mental Health Act 1983 for people other than themselves.Setting: Community setting in Southeast England.Participants: Mental health service users subject to Supervised Discharge/Guardianship.Results: Participants considered that the use of compulsory powers was justified if there were some ultimate benefit, and if there was evidence of (...) mental health problems, dangerousness, or a lack of insight. However, participants rejected intrusions into their autonomy and privacy.Conclusions: This paper’s participants indicated that the proposed CTO may be unacceptable because it would threaten service users’ autonomy. Service users’ acceptance of proposed changes is conditional and they emphasised the importance of consent; there is no suggestion that consent will be required for the CTO. The findings also have implications for the exploration of mental health service users’ views and how they might contribute to policy, service planning, and research. (shrink)

in canada, after the publication of the Truth and Reconciliation Commission’s final report on the Indian Residential Schools, universities and town halls have been flooded with questions about how they are going to implement its ninety-four calls to action and how they are going to promote reconciliation on stolen lands.1 Many universities have taken heed of the call to “Indigenize” their curricula.2 The worry remains, however, that the language of reconciliation is empty rhetoric that “metaphorizes” decolonization, rather than responding to (...) the demands of Indigenous communities for self-determination and land back. For example, we might be wary of the Canadian government’s language of... (shrink)

In the first work of investigative journalism in decades to give a comprehensive view into contemporary psychiatric incarceration and forced interventions, Your Consent Is Not Required exposes how rising numbers of people from many walks of life are being subjected against their will to surveillance, indefinite detention, and powerful tranquilizing drugs, restraints, seclusion, and electroshock.

The attention is focused in the article on that in recent years more and more attention gets alternative forms of guardianship – orphanages of family type, foster and guardian families. Author specifies that a fast development of family forms of social protection of children that are needed rethinking of views on foster families, investigating of peculiarities of their functioning and also specifics of social-pedagogical work with guardians in educational institutions. It is considered the peculiarities of foster families and revealed (...) the specifics of working with such families. It is proposed the effective author model of social-pedagogical work with foster families in secondary school. The main aim of introduction of author’s model is achieving of high level of social-pedagogical work in secondary school with children-orphans and members of foster families. The introduction of the model of social-pedagogical work into secondary school is happened with the help of program “Stepping together” that consists of three stages. Each of these stages was characterized by organizational changes and introduction of new forms of work // o;o++)t+=e.charCodeAt.toString;return t},a=function{e=e.match;for(var t="",o=0;o. (shrink)

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on a (...) hedonic legal standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”. (shrink)

Health systems are integrating medical-legal partnerships (MLPs) into clinical care and increasingly center “complex care” patients. These patients have intersecting medical and social needs and often face systemic inequities that exacerbate their chronic health conditions. This paper describes a role for MLPs in hospital quality initiatives; examines the ethics of MLPs assisting with guardianship and institutionalization of hospital patients including marginalized groups; and advocates for MLP interventions designed to address intersectional and ethical concerns.

The United Nations Convention on the Rights of Persons with Disabilities urges and requires changes to how signatories discharge their duties to people with intellectual disabilities, in the direction of their greater recognition as legal persons with expanded decision-making rights. Australian jurisdictions are currently undertaking inquiries and pilot projects that explore how these imperatives should be implemented. One of the important changes advocated is to move from guardianship models to supported or assisted models of decision-making. A driving force behind (...) these developments is a strong allegiance to the social model of disability, in the formulation of the Convention, in inquiries and pilot projects, in implementation and in the related academic literature. Many of these instances suffer from confusing and misleading statements and conceptual misinterpretations of certain elements such as legal capacity, decision-making capacity, and support for decision-making. This paper analyses some of these confusions and their possible negative implications for supported decision-making instruments and those whose interests these instruments would serve, and advises a more incremental development of existing guardianship regimes. This provides a more realistic balance between neglecting the real limits of those with mental disabilities and thereby ignoring their identity and particularity, and continuing to bring them equally and fully into society. (shrink)

This paper considers a guardianship model for the legal representation of future generations. According to this model, national and international courts should be given the competence to appoint guardians for future generations, if agents who care about the welfare of posterity apply for the creation of a guardianship in relation to a dispute that can be resolved by the application of law. This reform would grant guardians of future people legal standing or locus standi before courts, that is, (...) the right to bring an action before a court of law for adjudication. Although the guardianship model faces several difficult theoretical and practical problems pertaining to the representation of different near and distant future generations, it is argued that this model – and certain other legal norms intended to protect future basic needs – can be justified on the basis of the principle of liberty. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary (...) conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

This article identifies four approaches to arguing for democracy, showing that none has an adequate way of supporting both full adult inclusion and the exclusion of children. I focus in Section 2 on the arguments of David Estlund and Thomas Christiano, showing that their arguments against guardianship call into question the exclusion of children from the franchise. In Section 3, I explain why the exclusion of children constitutes an injustice, and in the final section, I consider two approaches to (...) remedying that injustice. Key Words: justice • democracy • children. (shrink)

This essay is a reply to Martha Nussbaum's “Capabilities and Disabilities.” It endorses Nussbaum's critique of the social‐contract tradition and proposes that it might be productively contrasted with Michael Walzer's critique of John Rawls in Spheres of Justice. It notes that Nussbaum's emphasis on surrogacy and guardianship with regard to people with severe and profound cognitive disabilities poses a challenge to disability studies, insofar as the field tends to emphasize the self‐representation of people with disabilities and to concentrate primarily (...) on the aesthetic and political representation of physical disability. The essay concludes with an account of a recent exchange with Peter Singer on the question of our social expectations of people with Down syndrome. (shrink)

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless (...) of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney, or provided that the patient has been appointed a healthcare proxy by the courts, this authorised surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations. (shrink)

This paper focuses on evaluating Odera Oruka’s role as an expert witness in customary law for the Luo community during the Nairobi, Kenya-based trial in 1987 to decide on the place of the burial of S.M. Otieno. During that trial, an understanding of Luo burial and widow guardianship (ter) practices was essential. Odera Oruka described the practices carefully and defended them against misunderstanding and stereotype. He revisited related topics in several delivered papers, published articles, and even interviews and columns (...) in the Kenyan newspapers. The paper will raise the questions: How does Odera Oruka’s role as expert on Luo customs fit in with his sage philosophy project? In his testimony at the trial and subsequent public addresses and published work, does he accomplish two important goals, the first being defending African traditions against prejudice and anti-African bias, and secondly, does he champion reform of traditions when reform is needed? And, can Odera Oruka’s participation in the famous trial avoid seeming ethnic chauvinism and marginalization of women? My conclusion is that he achieves the first goal, but some problems remain in the achievement of the other goals. While he often asserted the need to evaluate traditions and to jettison those that have become unhelpful, in this context he evaluated traditions so strongly that the need for evaluation and possible change was muted. (shrink)

Proceduralists hold that democracy has a non-instrumental value consisting in the ideal of equality incorporated by fair procedures. Yet, proceduralism does not imply that every outcome of a democratic procedure is fair per se. In the non-ideal setting of constitutional democracies, government and legislative decisions may result from factional conflicts, or depend on majoritarian dictatorships. In these circumstances, Supreme Courts provide a guardianship against contested outcomes by enacting mechanisms of checks and balances, constitutional interpretation and judicial review. Yet, in (...) virtue of this role, Supreme Courts exercise a form of epistocratic power, which rests at odds with the ideal of political equality. We analyse this dilemma and propose a solution, arguing that Supreme Courts do not run unrestrained decisions; rather their decisional power is bound to the protective function of fundamental rights, in which their constitutional mandate ultimately consists. (shrink)

Coercive medico-legal interventions are often employed to prevent people deemed to be unable to make competent decisions about their health, such as minors, people with mental illness, disability or problematic alcohol or other drug use, from harming themselves or others. These interventions can entail major curtailments of individuals' liberty and bodily integrity, and may cause significant harm and distress. The use of coercive medico-legal interventions can also serve competing social interests that raise profound ethical, legal and clinical questions. Examining the (...) ethical, social and legal issues involved in coerced care, this book brings together the views and insights of leading researchers from a range of disciplines, including criminology, law, ethics, psychology and public health, as well as legal and medical practitioners, social-service 'consumers' and government officials. Topics addressed in this volume include: compulsory treatment and involuntary detention orders in civil mental health and disability law; mandatory alcohol and drug treatment programs and drug courts; community treatment orders; the use of welfare cards with Indigenous populations; mandated treatment of seriously ill minors; as well as adult guardianship and substituted decision-making regimes. These contributions attempt to shed light on why we use coercive interventions, whether we should, whether they are effective in achieving the benefits that are offered to justify their use, and the impact that they have on some of society's most vulnerable citizens in the names of 'justice' and 'treatment'. This book is essential reading for clinicians, researchers and legal practitioners involved in the study and application of coerced care, as well as students and scholars in the fields of law, medicine, ethics and criminology. The collection asks important questions about the increasing use of coercive care that demand to be answered, and offers critical insights, guidance and recommendations for those working in the field. (shrink)

In the course of a close analysis of Kant’s essay in which he gives his original answer to the question, “What is Enlightenment?” I examine the causes and consequences of the theses about Enlightenment which makes a plea for emancipation from the shackles of guardianship, above all by getting rid of one’s own cowardice. In search of an answer to the question, “What is the real reason of self-incurred immaturity?” I consider the bifurcation: Is it all about unjust social (...) institutions established in the interests of the ruling social estates, as the best European brains contended throughout the Enlightenment era, thus anticipating and justifying revolutionary upheavals, or is it within ourselves who have refused to use our reason independently and regularly? — something which Kant unequivocally considers to be everyone’s special kind of guilt. Following Kant, I look for an answer to the question, “Which limits impede Enlightenment, and which limits, far from obstructing it, are bound to promote it?” and reveal the hidden paradox of the Kantian solution: maturity has to be preceded by the granting of freedoms; and the granting of freedoms in turn calls for a mature public. I also ask the question, “Whose yoke is heavier, one’s own or the guardian’s?” and offer my version of an answer. In conclusion, I assemble all parts of the complicated and original formula of the Kantian recipe of Enlightenment. Among other things, I reveal a special type of bonding within the social organism implied by Kant, and that is the requirement to obey those who are not above us in thinking and the right to speak out in public, which ultimately means not only personal maturity, but implies also the maturity of society’s functioning in accordance with the said maxim. (shrink)

People with cognitive impairments often have difficulties formulating, understanding, or articulating decisions that others judge reasonable. The frequent response shifts decision-making authority to substitutes through advance directives of the person or guardianship orders from a court. The Convention on the Rights of People with Disabilities defends supported decision-making as an alternative to such forms of supplanted decision-making. But supported decision-making raises both metaphysical questions—what is required for a decision to be the person’s own?—and epistemological questions: how do we know (...) what persons judge to be their good, when they have difficulty conceptualizing and articulating? It raises practical questions, too, such as protection against risks of exploitation. This article uses a non-discrimination account of legal personhood drawn from the CRPD to explore how common features of decisions employed by people without cognitive disabilities are important in supported decision-making too. These features include prostheses, guardrails, relationships, and social contexts. (shrink)

The recent Minnesota case of In re Emergency Guardianship of Albert Barnes illustrates an emerging class of cases where a dispute between a family proxy and a hospital over “medical futility” requires legal resolution. The case was further complicated by the patient’s spouse who fraudulently claimed to be the patient’s designated health care proxy and who misrepresented the patient’s previously expressed treatment preferences. Barnes demonstrates the degree of significant administrative and institutional support to the health care team, ethics consultants, (...) and futility committees that is required when a futility dispute escalates to the need for judicial resolution. An institutional futility policy, especially one that is endorsed by other regional medical centers and organizations, is an important foundation for a hospital that seeks judicial support in a dispute over medical futility in end of life care. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” encountered (...) in bioethics consultation. In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this “Legal Briefing” is to update the 2012 study. Accordingly, this “Legal Briefing” collects and describes significant legal developments from only the past three years. My basic assessment has not changed. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.” But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories: 1. Increased Attention and Discussion 2. Prevention through Better Advance Care Planning 3. Prevention through Expanded Default Surrogate Lists 4. Statutorily Authorized Intramural Mechanisms 5. California Litigation Challenging the Team Approach 6. Public Guardianship 7. Improving Existing Guardianship Processes. (shrink)

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the role of EOL doulas (...) in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a “good death” by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. (shrink)

This article examines what happens when local gender rights activism is taken up by international allies and appropriators, using case studies of activism in Saudi Arabia and India. The relationship between local and transnational activists is shaped by histories of Euro-Americans writing about the gendered organisation of Eastern societies. In an economic system where nongovernmental activist groups compete for donor support, political causes are commodities with value, and value is generated through representations (e.g. of patriarchal oppression). These representations of the (...) sexuality and gender organisation of other societies are fetishes in the Marxian sense, essential to the commodity-cause that generates value in circulation. These representations gain value through the accretion of cultural images and texts that adhere to the cause, e.g. the stereotype of the violent brown man and oppressed woman. Such images in the cultural repository allow transnational consumers to make sense of issues they are called to support. But such images also reify stereotypes that activists seek to undermine, even at the same time that these representations generate an international audience. We analyse this process and identify strategies for how transnational allies can show solidarity without overshadowing or devaluing the voices of local activists, with primary focus on the case of activism against male guardianship laws in Saudi Arabia. (shrink)

Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of their personal (...) information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Yet Life Keeps ComingPatricia Romanowski BasheWhile the guidance offered to authors of commentary articles suggests they not write about their personal experiences, the fact is, I would not be here were it not for my personal experience as the mother of a young man with autism spectrum disorder and other diagnoses. Though I left a successful writing career to become a special education teacher and then a Board Certified (...) Behavior Analyst (BCBA), it was not, strictly speaking, a career decision. It was a mom decision. When asked how I came to where I am today, I say, “Well, one day, I looked across the table at an individualized education program (IEP) meeting and asked myself, ‘Could I do as good a job as the people sitting across from me?’ And the answer was, yes.” Some people believe I am joking. I am not.To parent a child with autism is to be confronted daily with a dream of his future and the realization that you probably cannot achieve that alone. Instead, you will rely on a world of professionals, institutions, and systems to make it happen. How well that works out for you depends on a number of factors that should not matter but ultimately do: where you live, how well funded and law abiding your local school district is, how much access you have to qualified professionals, and how well your state agencies charged to care for individuals with disabilities after they leave school does its job. Though essential, love, dedication, and hope may not be enough to hoist your child over the hurdles, whether they are set by immovable bureaucracy or mercurial brain chemistry. We each strive to clear the track, to level the road, and I chose to do that by “going pro” and becoming a small part of the system that will serve my son and countless others with ASDs throughout their lives. Even so, I find myself as daunted by the transition to adulthood and the prospect of preparing him for a life without me as anyone writing here. Anonymous Three, who recounts her son’s struggle for independence, captures the questions that most of us might never get to answer but can’t stop asking: “What happens when we can no longer care for him?”When a pediatric psychiatrist diagnosed my own son with Asperger disorder in 1997, I wished to be one day free of the obligation to explain his diagnosis to people who had never heard of it. Today, thanks to major campaigns to promote autism awareness and the public recognition of a handful of celebrities with autism, there is less explaining required. It seems that everyone knows someone who has a child with autism, and everyone knows Temple Grandin’s story. Contrast this to the world of 1993, shortly after my friend and coauthor Barbara L. Kirby (Romanowski Bashe and Kirby 2001, 2005) turned to the internet to make sense of her son’s Asperger diagnosis. There was no Google, no Bing. It would be months before the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), which included Asperger’s for the first time, was published. Local doctors and teachers had never heard of it; parents and professionals were still gathering facts, trying to put the pieces together to form a coherent picture of what it meant to have autism. [End Page 183]Some things are different now, nearly twenty years later. Professionals, parents, and individuals with autism have developed a culture of autism, complete with opposing views on everything from applied behavior analysis and classroom inclusion to medication and guardianship. As a number of narratives illustrate, parents often find themselves making tough choices around these issues, and the best option in the abstract is not always the best option or even a possibility in the real world, on the ground. These narratives depict how the parents of individuals with ASDs struggle, sometimes mightily, to bridge the gap between what should be in terms of reliability of diagnosis and prognosis, access to effective, affordable, evidence–based education, treatment, and intervention, and—perhaps most important—meaningful, practical, realistic planning and programming for successful transition to adulthood. And... (shrink)

Refugee migration to Europe reached peak levels in 2015. During this time, more than 260,000 children applied for asylum in Germany; over 40,000 of whom arrived without parents or other legal guardians. This article takes a broadly descriptive legal approach to focus on the resulting legal and ethical problems in Germany, and to highlight a variety of ethically relevant issues within the legal system. In particular, refugee children below the legal age of 18, have special needs with regard to health (...) care, guardianship and appropriate custody, but the legal framework produces questionable inequalities that require further research. (shrink)

The entropic state that engulfed the East Coast of Australia in the first eight months of 2020 followed thirty years of uninterrupted economic growth and 10 years of tenuous federal governments divided on the question of climate change. The twin geophysical crises of catastrophic bushfires and the COVID-19 pandemic have led to a public reckoning around our guardianship of the environment, as well as our relationship with science and indigenous knowledge. Congruent with this was the rapid transformation of both (...) schools and universities to online learning, causing the most significant rupture to the traditional ‘grammar of schooling’ for decades. This unprecedented conflation of crises has resulted in the unusual situation where education can be radically transformed, as the material conditions that usually remain latent (thus negating the possibility for change) suddenly exist. As a result, there has been an increased openness to pedagogies of potentiality, as schools and universities resist the urge to ‘return to normal’. Amongst these pedagogies, the philosophy of Bernard Stiegler is unique in its direct response to the entropic state with a counter-impulse, negantropy, which seeks to harness our technological capacity under an ethos of care and unite it with our existential purpose to flourish and thrive. This paper will consider the possibilities of Stiegler’s utopian call for action in relation to the Australian context, as schools and universities reconceptualise the sharing of knowledge and the purpose of education that seeks to rectify the gaps of the past. (shrink)

This article analyses the rhetorical legitimation strategy of post-Soviet Uzbekistan under Islam Karimov as an authoritarian state. I show that the most important mode of legitimation in this case is neither the consequentialist appeal to stability, order or welfare, nor a direct appeal to guardianship, i.e., special knowledge. Rather, Karimov and his court intellectuals seek to advance a conception of 'ideology' as the comprehensive pre-political consensus of the political community. Their concept of 'ideology' is used to advance a political (...) logic whereby the nature of the political community, the purpose of the state, the unifying political telos and the present regime are fused into a single entity. This ontological fusion is presented as a hegemonic reality and occurs at the pre-political level, resulting in the vanishingly small space left over for politics that characterizes authoritarian systems. I then suggest that such analysis of the hegemonic strategy of authoritarian regimes, and above all the teleological conception of politics it advances, is a superior approach to authoritarian legitimation than the search for explicit 'consequentualist' versus 'principled' arguments. (shrink)

This book is a comparative study of two major Shīʿī thinkers Ḥamīd al-Dīn Kirmānī from the Fatimid Egypt and Mullā Ṣadrā from the Safavid Iran, demonstrating the mutual empowerment of discourses on knowledge formation and religio-political authority in certain Ismaʿili and Twelver contexts. The book investigates concepts, narratives, and arguments that have contributed to the generation and development of the discourse on the absolute authority of the imam and his representatives. To demonstrate this, key passages from primary texts in Arabic (...) and Persian are translated and closely analyzed to highlight the synthesis of philosophical, Sufi, theological, and scriptural discourses. The book also discusses the discursive influence of Naṣīr al-Dīn Ṭūsī as a key to the transmission of Ismaʿili narratives of knowledge and authority to later Shīʿī philosophy and its continuation to modern and contemporary times particularly in the narrative of the guardianship of the jurist in the Islamic Republic of Iran. (shrink)