Homo Sacer / Homo Demens. The Epistemology of Dementia in Contemporary Literature and Theory

Abstract

What, if anything, can literature and critical theory contribute to our understanding of dementia? Their contribution to insight into disease and illness has customarily taken place under the rubric of the medical humanities, as that interdisciplinary field has gained institutional visibility since the beginning of the new millennium. In the so-called first wave of the medical humanities (Whitehead and Woods 2016, 1), literature participated in a fairly strict division of labour: while the biomedical sciences provided scientific knowledge, literature figured as a purveyor of affect – as a conduit of feeling that humanises the encounter between the biomedical apparatus and ill bodies and minds. In offering ethical considerations, educational perspectives and personal accounts of illness experience (3), literature functioned less as an independent source of knowledge than as a corrective to the dehumanising drift of science. This relation of complementarity informed two distinct roles for humanities scholarship: either it served as a “positive, pliant and benevolent” helpmate of medicine, or it did duty as its “antagonistic, noisy and opinionated” bad conscience (Viney et al. 2015, 3; similarly Maginess 2017, 6). Arguably, this bifurcation between antagonistic and conciliatory roles precludes a truly interdisciplinary encounter between literature, critical theory and biomedicine. A recent wave of critical medical humanities scholarship has called for a more “robust commitment to new forms of interdisciplinary and cross-sector collaboration” (Viney et al. 2015, 2). In this new dispensation, the humanities would no longer only supply experience, education and empathy but would recognise that encounters with illness are often marked by negative affects – by “affective distance, and even a lack of care” (Whitehead and Woods 2016, 5). A critical medical humanities would continue to honour “a tradition of antagonistic thinking” (8), but it would mobilise critical ideas for constructive purposes: while “sensitive to imbalances of power, implicit and explicit,” such a critical medical humanities would include “activist, skeptical, urgent and capacious modes of making and re-making medicine [. . .] and hence [medicine’s] ability to transform, for good and ill, the health and well-being of individuals and society” (Viney et al. 2015, 3). The emphasis, in this critical or second-wave medical humanities, is