What is It Like to Communicate While Locked-In? First-person Perspectives On Communication and Implications for Design of Brain-Computer Interfaces

Brain-Computer Interfaces (BCIs) promise to resolve the communication problems of people who are unable to move and speak due to paralysis (Locked-In Syndrome/State; LIS). Current BCI research focuses largely on improving speed and accuracy of BCI-based communication, but this functional perspective fails to capture the existential importance and richness of human communication. In phenomenological studies of human experience, communication is typically theorized as embodied and relational. Here, we propose to use this phenomenological perspective to capture the experience of the communication difficulties for people with LIS and to assess the potential impact of communication solutions such as BCIs. We present the results of a semi-structured phenomenological interview study into experiences of communication of people with LIS and their daily communication partners. We found that people with LIS and daily communication partners are not only at risk of not being able to communicate with each other, but as a result may not see and perceive each other as full persons. Vice versa, access to and richness of bodily and technological communication are enabling factors for the sense of ‘relational personhood’ – the extent to which people acknowledge one another as full persons. These findings pave the way for a new outlook on BCI design and urge to further explore the inclusion of relational personhood in the clinical outcome assessment of BCIs for people with communication impairment and their daily communication partners.