Pillow Research: multiple diagnoses and hidden talents

Objectives This project intends to bring together academic and artistic approaches to manifest and contribute to questions of public and philosophical involvement in the field of neurosciences, clinical medicine and patient`s care. It is designed as a collaborative research approach in the context of the long-term care of severely disabled patients. In this regard "pillow research" is a heuristic method to develop a so-called "pillow kit" (a series of artworks/of pillows and visualizations) as an innovative case to contribute to and reflect on questions about our health care system and quality of life issues; about controversies referring to the "configurations" of our bodies in times of "biopolitics"; about clinical research and medicine, the collaborations between experts and non-experts and the question of participation in the face of scientific innovations. Background The long-term rehabilitation of patients in vegetative state and minimally conscious state - conditions of extensive unawareness and unresponsiveness to external stimuli - calls for 24-hour care at specialized wards and nursing facilities where patients live together with professional caregivers, family members, physicians, therapists and - sometimes - with ethnographers, researchers and artists. The outcome of interactions between all parties concerned is uncertain since diagnosies, prognosis and therapy alike are case dependent, insecure and controversially discussed. Method We assume that we are facing patients and non-patients with the potential to become "talented bodies/persons" with their original abilities and skills. We further assume that the unfolding of these talents strongly depends on the interactions between patients and non-patients. With reference to sensory stimulation concepts as they are discussed in the respective therapeutic context we intend to develop a method called "pillow research" that aims to enrich and explore these interactions by means of modifying and transforming an ubiquitous interface: the pillow. The development of a number of "technically (digital and analog) enhanced" pillows follows the principles of a sociology of translation. What we mean by that is the creation of a distributed, situated and collective diagnostic setting that explores the meaning of "diagnosing/assessing" of consciousness, perception, emotions at the intersection of clinical medicine, therapeutic nursing and lay expertise. Benefits The project would will allow us to deepen the understanding of the relationship and interdependencies between medical, nursing and lay rationalities in the context of health care. Furthermore, the proposed research could provide substantial and original knowledge and insights in the field of science and art. Team The research team combines methods from the fine arts, ethnography, science and technology studies, medical anthropology and digital arts.

Pillow research is an intensive transdisciplinary investigation of a well defined smaller unit of research. By unit of research we refer to a syndrome that may develop after traumatic brain injury. Names like Vegetative State, Unresponsive Wakefulness Syndrome, or, Apallic Syndrome try to describe a condition where patients show cycles of wakefulness but no evidence of awareness of self or environment. This syndrome calls for 24-hour care at specialized wards and nursing facilities where patients live together with professional caregivers, family members, physicians, therapists.The artistic-research project considered the syndrome not as a pre-given (medical) entity that forms part of the patients but as a heterogeneous and fragile dynamical configuration that is comprised of syndrome-versions that come into being by medical, nursing, administrative, economic, neuroscientific or private caring practices. Pillow research was conceptualized as kind of breaching experiment that would allow to enrich interdisciplinary routines by means of transformations or modifications of practices, routines and habits, as well as of the use and meaning of materials, instruments and devices. This breaching experiment was conducted by means of socio-technical devices that we called pillows and which were introduced into the daily routine of a long-term care unit. Ethnographic research, the process of development and application was part of this intervention in a clinical environment that should help to focus on our research questions.The role of perception, cognition, emotion was investigated by a Humor Pillow, and a Inside/Outside Pillow, the role of the relationship between patients, doctors, and nurses and ourselves was investigated by a Tickle Pillow and additional initiatives that aimed to fit "naturally" into the clinical life by participating in activities that might be general useful to the overall goal to understand the syndrome. The relationship between experts and non-experts was investigated by an Olfactory pillow and the development of an Auditory Pillow.The research activities resulted in the development of a method that we call Incubation. This method allows to articulate with a research topic without starting from dichotomies that frequently shape the discourse in research domains: in the context of social sciences and transdisciplinary research we refer to the divisions between description and intervention, theory and practice, language and materiality, objectivity and subjectivity, neutrality or politics; in the context of the arts we find additional opposing principles like critique and propaganda, or, form and content; furthermore, on the side of organizations we face control and perturbation, members and non members, professionals and clients.We think that this method is a relevant contribution for method development in the fields of artistic research, transdisciplinarity and the social sciences because it shows how to relate (artistic) research to a matter of concern or a research topic.