Fragile Epistemic Subjects in the Context of Disability and Chronic Illness
Final Report Abstract
One manifestation of epistemic injustice occurs in asymmetric relations, such as between patients and physicians. Indeed, expert testimony is often deemed more credible than the testimony of non-experts, putting patients at a disadvantage; particularly patients on the intersection of several social identity markers such as disability, gender or race. On the other hand, the medical context is unlike many other social contexts, in that the asymmetrical relationships between physicians and patients are maintained with good reason. Physicians help patients make choices. Yet, there are agential and structural prejudices against patients, and especially patients with prior disabilities, that put patients at serious risk for being misunderstood, not listened to, or denied proper medical care. The project that sought to take the research on epistemic injustice in the context of health care, disability, and chronic illness a step further by (a) developing a theory of disabled and/or chronically ill persons as fragile epistemic subjects, and (b) exploring the implications of this theory for social policies and institutional processes in health care situations. The project focused on four significant aspects of the theory of fragile epistemic subjects that helped to understand the lived experiences of disabled and/or chronically ill patients within the broader structures of health care systems: fragile epistemic subjects i. are to a significant extent dependent on medical knowledge, institutional structures, and/or the care provided by others (thesis of dependency); ii. are vulnerable in light of arbitrary epistemic and social inequality within the healthcare system (thesis of vulnerability); iii. have particular epistemic insight resulting from the everyday navigation of said structures (thesis of standpoint); and iv. develop a specific form of agency as a response to the given inequalities that they have to navigate on a daily basis (thesis of agency). Understanding the interrelatedness of these four aspects give important insight for strategies and public policies to ameliorate (unjust) structures of given healthcare systems; with a focus on specific aspects of the healthcare systems in Germany and California, US.
Publications
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Epistemische Ungerechtigkeiten. De Gruyter.
Hänel, Hilkje Charlotte
