This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...) with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that...

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on (...) par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals. (shrink)

Virginia Held assesses the ethics of care as a promising alternative to the familiar moral theories that serve so inadequately to guide our lives. The ethics of care is only a few decades old, yet it is by now a distinct moral theory or normative approach to the problems we face. It is relevant to global and political matters as well as to the personal relations that can most clearly exemplify care. This book clarifies just what the ethics of care (...) is: what its characteristics are, what it holds, and what it enables us to do. It discusses the feminist roots of this moral approach and why the ethics of care can be a morality with universal appeal. Held examines what we mean by "care," and what a caring person is like. Where other moral theories demand impartiality above all, the ethics of care understands the moral import of our ties to our families and groups. It evaluates such ties, focusing on caring relations rather than simply on the virtues of individuals. The book proposes how such values as justice, equality, and individual rights can "fit together" with such values as care, trust, mutual consideration, and solidarity. In the second part of the book, Held examines the potential of the ethics of care for dealing with social issues. She shows how the ethics of care is more promising than Kantian moral theory and utilitarianism for advice on how expansive, or not, markets should be, and on when other values than market ones should prevail. She connects the ethics of care with the rising interest in civil society, and considers the limits appropriate for the language of rights. Finally, she shows the promise of the ethics of care for dealing with global problems and seeing anew the outlines of international civility. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue (...) the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

The ethics of care has flourished in recent decades yet we remain without a succinct statement of its core theoretical commitment. This book uses the methods of analytic philosophy to argue for a simple care ethical slogan: dependency relationships generate responsibilities. It uses this slogan to unify, specify and justify the wide range of views found within the care ethical literature.

The Ethics of Need: Agency, Dignity, and Obligation argues for the philosophical importance of the notion of need and for an ethical framework through which we can determine which needs have moral significance. In the volume, Sarah Clark Miller synthesizes insights from Kantian and feminist care ethics to establish that our mutual and inevitable interdependence gives rise to a duty to care for the needs of others. Further, she argues that we are obligated not merely to meet others’ needs but (...) to do so in a manner that expresses "dignifying care," a concept that captures how human interactions can grant or deny equal moral standing and inclusion in a moral community. She illuminates these theoretical developments by examining two cases where urgent needs require a caring and dignifying response: the needs of the elderly and the needs of global strangers. Those working in the areas of feminist theory, women’s studies, aging studies, bioethics, and global studies should find this volume of interest. (shrink)

The Ethics of Need: Agency, Dignity, and Obligation argues for the philosophical importance of the notion of need and for an ethical framework through which we can determine which needs have moral significance. In the volume, Sarah Clark Miller synthesizes insights from Kantian and feminist care ethics to establish that our mutual and inevitable interdependence gives rise to a duty to care for the needs of others. Further, she argues that we are obligated not merely to meet others’ needs but (...) to do so in a manner that expresses "dignifying care," a concept that captures how human interactions can grant or deny equal moral standing and inclusion in a moral community. She illuminates these theoretical developments by examining two cases where urgent needs require a caring and dignifying response: the needs of the elderly and the needs of global strangers. Those working in the areas of feminist theory, women’s studies, aging studies, bioethics, and global studies should find this volume of interest. (shrink)