Academic journal article Journal of Literary and Cultural Disability Studies

'The Country of My Disease': Genes and Genealogy in Alzheimer's Life-Writing

Academic journal article Journal of Literary and Cultural Disability Studies

'The Country of My Disease': Genes and Genealogy in Alzheimer's Life-Writing

Article excerpt

The essay explores the ways in which Alzheimer's life-writing negotiates contemporary biomedical discourses on the brain, brain disease, and selfhood, tracing the ways in which emergent genetic and neuro-scientific knowledge is organized and related to the scripting of life narratives - specifically Charles Pierce's account of his family's history of Alzheimer's disease in his memoir, Hard to Forget. The discussion of this text is framed by an engagement with Nikolas Rose and Carl Novas's work on biological citizenship and biosociality as a productive context in which to consider how Pierce explores the relationships between genetic research and genealogy and between biomedical and biographical models of the subject.


Lennard Davis (2002) has pointed to the protean nature of the category disability. The trouble we have in decisively, definitively determining its boundaries is one of the reasons he describes it as the paradigmatic postmodern subject position. As an identification that encompasses all of us, at some point, in some shape or form, it speaks to our incompleteness as humans, to our collective dependence and neediness. "Impairment", he notes, "is the rule and normalcy is the fantasy" (Davis 30). His discussion is framed, in part, by the necessity to think through the cultural significance of emergent genetic technologies and their impact upon the ways we think about the relationship between selfhood and the category of disability. One of the consequences of genetic screening and profiling is the necessity to accommodate the particular ways and means of our inevitable impairment. The fictions of autonomy and inviolability are dissolved as soon as we read the map of our inherited disposition to succumb to this or that condition.

The emergence of Alzheimer's disease (AD) in epidemic proportions toward the end of the twentieth century is the product of biomedical discourse; it is an attribution that signifies the biomedicalisation of dementia in the elderly (Cohen, 2006). What was once viewed as a natural consequence of human ageing has been recast as a definable pathology. Genetic research has played a central role in this process and has done so with typically ambivalent consequences. The ever elusive promise of the miracle cure that legitimates such research is undercut by the fact that the knowledge that enables geneticists to predict the disease (with certainty in the case of early onset AD, and probability in the case of late onset AD) so far outstrips the development of any effective pharmaceutical intervention. This has profound consequences for the ways in which those burdened with the knowledge of their Alzheimer's genes imagine themselves and construct life narratives. It is precisely the weight of this realisation and the need to make sense of it in relation to the other stories that he tells about himself and his family that Charles Pierce explores in his memoir, Hard to Forget. What I want to do in this essay is to highlight the ways in which Pierce's text engages with the meaning of identity in both personal and cultural terms in the light of current medical and genetic research on AD. What his memoir so brilliantly demonstrates are the complex and contradictory ways in which particular conditions are integrated into the nexus of stories that constitute identity. This involves forging new affiliations and new ways of mapping social and familial relationships in the light of both Alzheimer's as his 'family's disease' and the research that seeks to explain it.

Biological Citizenship

I would like to start by contextualising my reading of Pierce's memoir in relation to Nikolas Rose and Carl Novas's work on biological citizenship and the reframing of identity in the age of the genome. Their work is important because it moves beyond the assumption of a kind of ontological malignancy on the part of scientific and medical discourse that is often taken as a given in human scientific critiques of these fields. …

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