Abstract
Futures of Forgetting: Alzheimer’s Disease and the Lively Politics of Anticipation
by
Jennifer Mei Lum
Doctor of Philosophy in Rhetoric
University of California, Berkeley
Professors Michael Wintroub and Lawrence Cohen, Co-chairs
This dissertation explores how Alzheimer’s disease (AD) has been imagined at the turn of the 21st century in American culture. It asks, more specifically, how AD has become an object of forward-looking thinking, feeling, acting, and organizing within narratives told by different kinds of people, including scientists, pharmaceutical drug marketers, policymakers, writers of popular fiction, and disease activists. I take as a point of departure the concept of a ‘health politics of anguish’, which scholars in the social sciences and humanities have deployed in critiquing the social construction of Alzheimer’s disease as an experience of devastation and loss. These arguments have pointed out the mobilization of such affect by myriad stakeholders in the disease, including scientific researchers seeking to build careers, pharmaceutical companies and the (anti)aging industry at large seeking financial profit, and grassroots coalitions of private citizens channeling their own grief over Alzheimer’s to convince researchers and policymakers of the imperative of developing a drug-based cure.
In my analysis, however, I take a different approach, by revisiting the assumption that ‘anguish’ has been the most significant and strategically effective kind of affect to be shored up in relation to Alzheimer’s to begin with. Instead, I engage with other kinds of feelings and expressions about AD that seem to be overflowing within scientific narratives and mainstream media in the early 2000s, such as excitement, promise, and love, and that resonate with the concept of ‘regimes of anticipation’. The latter refers to the forward-looking posture that people assume, particularly regarding issues pertaining to health and medicine, amid conditions of increasing uncertainty. In a more grounded sense, regimes of anticipation refer to the consequences of structural and cultural shifts that have unfolded since the end of the 20th century. These shifts include the (contested) corporatization of biomedical knowledge production, and its financially speculative values and practices; the psychic and material responsibilization of the individual subject as a potential disease sufferer; and the anticipatory kinds of affect that these developments have engendered.
Drawing upon tools from the history, anthropology, and cultural studies of science, this dissertation throws into relief the historicity of our thoughts, feelings, actions, and imagination vis- a- vis Alzheimer’s, in finer-grained terms than an emphasis upon the politics of anguish has allowed thus far. I argue that regimes of anticipation have taken shape within the promissory values and practices of scientific community-building, and the public-private partnerships upon which AD research has come to depend; within the biomarkers for AD risk assessment, and the guidelines for recruiting future clinical trial subjects, that researchers have designed; within the speculative meanings assigned to the APOEe4 gene as a marker of higher susceptibility to Alzheimer’s; within advertisements for drug compounds promising to mitigate symptoms of the disease; within the novel, Still Alice, which details a high-functioning academic’s descent into AD at the age of 50 and her attempts to stave off her decline; and within the highly corporatized practices of fundraising activism for AD research at the annual Power of Love Gala in Las Vegas. This anticipatory orientation toward Alzheimer’s, I suggest, illustrates the increasingly tenuous boundaries between living while dying, and dying while living, at the beginning of the 21st century.
