Historicizing Disability and Data: The Promises of DH

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Disability scholars like Lennard Davis have traced the historical development of the “norm” or average back to the rise of statistics in the nineteenth century.[1] French statistician Adolphe Quetelet, by drawing on astronomical methods for locating stars, theorized the l’homme moyen, a combination of two separate constructions of the human: the l’homme moyen physique (physically average man)and l’homme moyen morale (morally average man). This “average man” was an abstraction composed of the averages of all identifiable human attributes within a state population. As this “norm” characterized the majority of bodies within that population, deviance from that norm became increasingly pathologized as “aberrant” or “abnormal.” The medical and moral imperative to aspire toward normativity ultimately came to underpin eugenic theories and movements in the second half of the century. The later transition to laboratory medicine[2] only further reduced bodies to data produced by laboratory testing procedures informed by principles in the hard sciences.

Particularly disturbing in this history is the complicity of mathematic and scientific knowledge-making practices in the devaluation of ill or disabled bodies. Advances in testing protocols and techniques have yielded new forms of data collected at the level of tissue, cell, or even molecule. This scalar shift in the understanding of human health and disease bears the promise of greater precision in diagnosis and therapeutic intervention. Yet, as the fields of narrative medicine and bioethics have reminded us, the reduction of individuals to clinical measurements, be it T-cell counts or disease phenotypes, risks dehumanizing patients by disregarding their personal accounts of illness experience. This flattening of patients to data, as I have suggested so far, has a history that needs to be better taught as a part of medical education and reckoned with in practice. We need to remain critical of the progress narratives attached to “Big Data.”

Critical to empirical knowledge-making is knowing how to read and interpret the data gathered. Digital Humanities can offer a digital literacy informed by humanistic principles of ethics and care that could do better justice to patients navigating the medical establishment, especially those from marginalized populations. One important intervention that Digital Humanities might make in resisting the deterministic overemphasis on quantitative data is a repurposing of “Big Data’s” collection and organizational methodologies toward a medical practice that is structured around the narratives of patients. If “Big Data” tells a very particular story about an individual in specific terms of vital statistics or symptoms, how might we use data-visualization or digital modeling to tell a different story that better witnesses the experiences of the patient? What would a tool like digital medical records look like if it were a visual map of the intersubjective experience between physician and patient during the medical encounter?

I want to conclude with a recent provocation by Angela Woods about the limits of narrative in medicine[3]. As Woods rightly points out, much of the framework of medical humanities and narrative medicine have relied on a naturalizing of narrative as intrinsic to health and even selfhood. While scholars have begun to call for more critical frameworks for the analysis of illness or disability narratives, what remains mostly unchallenged is the very normativity of narrative itself. I wonder then how Digital Humanities could better attend to forms of nonnarrative communication or provide both patients and medical professionals the means of “framing and communicating their experiences in ways which do not presuppose an orientation towards storytelling or narrative self-presentation.”[4] From a disability perspective, this seems urgently necessary as many disabled individuals may not understand or articulate their experience in conventional narrative forms. Digital Humanities bears the exciting potential to imagine new forms entirely.

[1]For more on this history, see Lennard Davis. “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century.” Enforcing Normalcy: Disability, Deafness, and the Body. New York and London:Verso, 1995.23-72.

[2]See N.D. Jewson’s “The Disappearance of the Sick-Man from Medical Cosmology, 1770-1870.” Sociology. 10.2 (1976): 225-244.

[3]Angela Woods. “The limits of narrative: provocations for the medical humanities.” Medical Humanities. 37 (2011): 73-78.

[4]Ibid. 76.