The datafication of pain: trials and tribulations in measuring phantom limb pain
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The datafication of pain: trials and tribulations in measuring phantom limb pain Alexandra Middleton1
© Springer Nature Limited 2020
Abstract This article takes the phenomenon of phantom limb pain (PLP), and a therapeutic technology designed to treat it, as springboards to critically consider a transformation: from deeply subjective experiences into quantitative data. Drawing upon ethnographic fieldwork on neuroprosthetic development, I examine an international clinical trial coordinated in Sweden using neuromuscular activation, machine learning, and virtual reality to treat PLP. I excavate the trial’s underlying fundaments and tools, tracing how they define, produce and record changes in an individual’s pain along the course of treatment, a process I call the ‘datafication of pain.’ Moving beyond the representational problematic of pain as simultaneously subjective experience and object of medical intervention, I ask: What gets left out, in this process of datafication? And what gets created in the void it leaves? I argue that the experimental paradigm of datafication elides certain key dimensions of pain itself, particularly its relational dimensions, and surfaces new pain-experiences in-situ. The stakes of this elision and surfacing not only impact the data produced, but also the ethics of actual lived, embodied experiences of pain itself. In leaking out of the experimental apparatus, the excess of pain becomes an artifact of the experimental process, as opposed to merely its object. This article examines the relational dimensions—of both the experimental process and phantom limb pain at large—elided by the datagathering apparatus itself. Keywords Pain · Phantom limb pain · Medical anthropology · Clinical trials · Biomedical engineering · Feminist studies of science and technology
* Alexandra Middleton [email protected] 1
Department of Anthropology, Princeton University, Princeton, USA Vol.:(0123456789)
A. Middleton
“It feels like a war is being waged inside my arm. It’s as if you poured acid into an open wound. It’s that feeling when you go into freezing water. Or that plant in the forest—stinging nettles?” Anders, a 48-year-old Swedish electrician who lost his left arm in an electrical accident seven years ago, reaches out and takes my forearm with his right hand. He pinches the skin between two fingers, twisting it. I feel something somewhere deep below the surface of my skin. He looks at me imploringly, and says, “I can’t find the words.” It is through such metaphors and sensory articulations that people like Anders, who have traumatically lost a limb, attempt to describe the sensation of phantom limb pain to me. We share a tacit awareness that these utterances will only ever remain at the level of approximation, for “how do you explain a feeling, especially a painful one?” as Anders pointedly probes. In spite of these approximations’ shortcomings—or because of them—these utterances tell another story worth tracing: a story about varied attempts to apperceive an invisible pain and the c
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