Living in the Age of Neuro-Digitalization

This paper examines the development of brain-computer interfaces (BCI) and new types of treatment with BCI by comparing its usage for patients with amyotrophic lateral sclerosis (ALS) as communication device in the light of (posthuman) cyborg theories while addressing critical disability studies. I argue that medical technology, when being developed, should be co-developed with (and for) patients to meet their needs and wants in terms of once lost (or altered) agency. BCI and similar neurotechnical procedures are intended, for example, to enable changed and restricted ability to communicate caused by ALS or to (re)use the side of the body affected by a stroke. Currently, such procedures are being tested in medical trials. In this paper, I present the challenges faced by patients with ALS in the communication through BCI. I base my presentation on participant observations of various neuroscientific trials as well as interviews with neuroscientists and patients. Empirical material is used to illustrate the difficulties and opportunities patients with ALS describe regarding the use of BCI. In doing so, I show that the ableist conception and cerebrocentristic treatment of these patients excludes technically challenging solutions and eventually ends in neurosurgery. Against this backdrop, I finally discuss the meaning of living in the age of neuro-digitalization.