EXPRESSIONS OF THE ETHICS OF CARE IN RESEARCH PROCEDURES: AN EXPERIENCE REPORT (original) (raw)
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EXPRESSIONS OF THE ETHICS OF CARE IN RESEARCH PROCEDURES: AN EXPERIENCE REPORT (Atena Editora)
EXPRESSIONS OF THE ETHICS OF CARE IN RESEARCH PROCEDURES: AN EXPERIENCE REPORT (Atena Editora), 2022
Research carried out in the field of disability commonly uses homogenizing methodological procedures, which do not accommodate the diversity of characteristics of the investigated subjects, prioritize the modes of participation as another expression of the ableism that is present in our society and do not respect differences in the way of expression and participation of each subject. The objective of this work is to share the experience of two researchers, at the doctoral level, who used methodological procedures organized from the contributions of the Universal Design for Learning in order to break with capacitatist and homogenizing practices that are often used in the collection of information and enable a care action in scientific practices. Establishing procedures respectful of the characteristics of the investigated public is a recognition by the academy of the oppressive conditions of scientific production itself. In the same way, reflecting on the production of knowledge based on elements of disability studies from a feminist perspective is to propose attitudes based on human rights, the ethics of care and social justice in the scientific field.
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Transdisciplinary Feminist Research: Innovations in Theory, Method and Practice, 2020
In this chapter, I explore recent work in Critical Disability Studies that animates the problem of false problems, reinforced by disciplinary obedience, by invoking transdisciplinary logics and thereby produce new, methodologically pluralistic problematizations. At stake is the nature of ‘the problem’ that prompts and sustains feminist research methods. A false problem keeps disciplinary methods and inherited logics intact; problematizing, in contrast, draws researchers into a kind of responsiveness that generates the search for new methods, as we accede, actively, to a research problem. This latter kind of problem compels responsive engagement, so much so that responsiveness itself becomes an ethical project.
Ethics of Care and the Experience of Disability: an Interview with
Revista Estudos Feministas, 2021
We met with Eva Feder Kittay in an afternoon of December at a café in New York City where she generously spoke for almost two hours about her work on the Ethics of Care and Disability, and her experience as Sesha's mother. A recently retired Professor of Philosophy from Stony Brook University, in New York, Kittay is a leading figure in feminist philosophy and philosophy of disability and has also made a substantial contribution to the fields of social and political theory and ethics. Along with other feminist theorists such as Joan Tronto and Virginia Held, Kittay was one of the pioneers in proposing an alternative ethical theory centered not on normative, general, universal principles of justice, but on interpersonal relationships, responsiveness to specific needs, and relationships of dependence and interdependence. An Ethics of Care. Her work as a philosopher is intertwined with her trajectory as Sesha's mother and she has built her career in a way that is not common within the discipline of philosophy: writing from one's own personal life. She was also a pioneer in bringing matters of care and disability-with special attention to cognitive disability-into philosophy. In 1999 she published the groundbreaking book Love's Labor: Essays on Women, Equality and Dependency (Eva KITTAY, 1999). In this collection of essays, she presented a feminist critique of John Rawls' theory of justice and formulated an alternative conception of equality that takes into account relationships of care, dependency, and the dependency workers. With that, she argued for the recognition of Care as a primary good. Moreover, she placed dependency, interdependency, and care in the center of the discussions on social justice. She also argues for a better distribution of dependency work, one that is not by gender, race or class, but through skills or inclination which requires the valorization of such labor. Since then, she has published over eighty papers, books and book chapters on issues of dependency, the relational self, the relationship of care and justice, asymmetry of relationships, social justice, politics of care, and disability. Kittay is also a prominent figure on Disability Studies. With a work grounded in an Ethics of Care, she has argued against philosophers and scholars who reduce the moral status of people with cognitive disability. With that, she addresses matters of the dignity of people with cognitive disability, personhood, justice, the role of care and of relationality, and also the guarantee of rights and access to health care for people with disabilities. She co-edited the book Cognitive Disability and its Challenge to Moral
Care Research and Disability Studies: Nothing in Common?
Disability researchers have voiced the criticism that the concept of care, together with research based on it, consists of the view that disabled people are dependent non-autonomous second-class citizens. The perspectives of disability studies and care research certainly are different from each other. Disability studies analyse the oppression and exclusion of disabled people and emphasize that disabled people need human rights and control over their own lives. Care research focuses rather on care relationships, informal and formal care, care-giving work and `an ethics of care'. Nevertheless, it is suggested here that the two perspectives are not mutually exclusive and that the two groups could learn from each other's approaches. For example, the relationship between disabled people and their personal assistants has much the same characteristics as the care relationship and requires a balancing of the needs and interests of the two parties. On the other hand, access to adequate care could be perceived as a basic civil and human right.
Ethical analysis of the concept of disability
Journal Information, 2004
The concept of disability from an ethical viewpoint was examined. Whether disability results from the way society is built and the way ideas and judgments considering disability are established in a communal interaction was discussed (i.e., is disability socially created and constructed?). Although views on disability emphasizing its social nature are basically sound, they are also insufficient because they fail to consider the normative dimension attached to the concept of disability. The core of the concept of disability is ethical, which is why a moral philosophical examination of the concept is needed. Three possible ethical theories of disability (universal, objective, subjectivist, and communitarian) are briefly presented and discussed and a preliminary outline of a basis for a sound ethical model of disability presented.
This exercise in free thinking aimed to raise questions about critical concepts of reification and assent in the ethical conduct of research involving individuals lacking capacity, as discussed by Smajdor. These concepts have broad implications across political, social, and ethical dimensions, transcending national boundaries. Notably, the article highlights Brazil's distinctive approach to addressing these issues. Reification, the reduction of individuals to objects, and assent, obtaining informed consent from those lacking full capacity, emerge as central ethical concerns in scientific research. In Brazil, research involving vulnerable groups, such as children, individuals with intellectual disabilities, and cognitively impaired elderly, is regulated by Resolution No. 466/2012 of the National Health Council. This resolution emphasizes the importance of respecting dignity and obtaining consent, even within these vulnerable populations.
THE CONCEPT OF CARE ETHICS IN BIOMEDICINE The Case of Disability
My aim in this paper is to offer an oblique approach to the question of biomedicine and the limits of human existence by discussing the role of a care-based ethic in contemporary discussions of disability. Contemporary discussions of disability have resisted the notion that disability is essentially a matter of biology and medicine – that biomedicine has any exclusive right to define, or even to redress, the adverse living conditions that physiological impairments can impose on individuals. In this paper I endorse this critique, but at the same time want to urge caution in a concomitant rejection, which is also found in the disability literature, of the conception of care. Care addresses the limits and limitations of human existence, and disability is a condition in which humans at once encounter and challenge those limits. In this respect, disability shares with many issues of biomedicine questions of vulnerability and dependency. An ethics based on care offers distinct resources for discussions of biomedicine, but I will confine my remarks to exploring the importance of these for disability.
Disability Studies as an academic field: reflections on its development
2010
Serious attempts are now being made to develop disability studies as an academic field in the Netherlands. On the one hand, the field will have to establish its place in the division of academic labor. On the other hand it will need to safeguard its relevance for, and connections with, the disability movement. How is this to be accomplished? The social model of disability offered an approach that, in the Anglo-Saxon countries, provided an integration of theoretical and sociopolitical objectives. But, in the first place this approach has not achieved the same purchase outside those countries, and in the second place it is currently subject to a variety of critiques. Drawing on insights from the social study of science, in this paper we argue that the social model should not be abandoned, but must rather be refined and extended to accommodate critique. Implications for the organization of the field of disability studies are discussed.