About the Project

Focus

The objective in the project is a development of and a continuation from Martiny’s  PhD dissertation, with regards to two fundamental ideas:

  1. Focusing on the psycho-social aspects of cerebral palsy (CP)
  2. Working with societal impact, which means working with communication, cultivation and implementation of the research in a social context.

The main question of the PhD project was: How do we help persons living with the brain damage, CP? This question is as complex and difficult to answer as any healthcare question, and thus needs further exploration.

The PhD thesis argued that there is a need to ‘open up’ the way we do (cognitive) science in order to understand what it means for a person to live with CP, and first then can we figure out how to help them. Based on this method of open-minded cognitive science the PhD project developed and used phenomenological interviews to co-generate data on the neurophysiological, psychological and social aspects of living with CP. From this theoretical work, an embodied-based model of intervention for CP was developed, focusing on the experience of self-control as a way to help people with CP. 

Problem

The methodology from the PhD will continue in the postdoc project to overcome two problems connected to the above ideas within the current research on CP:

1) Lack of psycho-social understanding of CP
Research on CP (and brain-damage in general) is largely focused on neurophysiological and motor aspects of living with CP, whereas the more personal, psychological and social aspects are overlooked. The neurophysiological research is necessary, but far from sufficient, and professional development in habilitation of CP requires an understanding of the ‘whole’, ‘unique’ and ‘complex’ person. As a supplement to the neurophysiological aspects of CP, knowledge of the psycho-social aspects is therefore necessary.

2) Research without societal impact
Typically, when researchers produce knowledge there is a danger for it to become self-referential and only beneficial for the researchers and the research environment. This is also the case in research on CP, but here it is vital that the research provides impact for those living with CP. Thus, the research done needs to be relevant for other stakeholders (relatives, therapists, doctors and other professionals) than only researchers.

Opening Up Research on CP

With the specific case of investigating the psycho-social aspects of living with CP, the project will continue to open up cognitive science. The Open Science movement has already made a substantial entry into cognitive science. This is especially seen with the newly launched Open MIND project, which is a collective experiment in open access publishing in cognitive science. However, this idea of opening up the minds of scientists isn’t new, but a fundamental premise in phenomenologically inspired embodied cognition.

The question is nonetheless: how do we ‘open up’ and embody our research methodology, research output and research communication? How do we, in a justifiable way, go beyond research as a process of mere hypothesis testing, deduction, argumentation, article writing and conference presentation?

As well as the PhD project this project will use phenomenological interview as a way to embody the research methodology and investigate the psycho-social aspects of living with CP. And in collaboration with professionals at the Elsass Institute (therapists, psychologists and doctors) and with the social services (The National Board of Social Services, The Danish Disability Council, The Danish Union for Cerebral Palsy, and The Danish Agency for Science, Technology and Innovation) it will further develop the embodied-based model of intervention for CP on a practical scale.

During the PhD project Martiny took part in developing a theatre performance at the Royal Danish Theater,  Humane Liquidation , and a documentary film, Natural Disorder, to both communicate what it means to live with CP to a broader audience and to empower persons with CP, their families and friends. This project once again uses theatre to embody and open up social experiments in cognitive science, as a way to investigate the social understanding of CP, and use audiovisual media to communicate the research in a more embodied way than seen in classical publications.

Postdoc Kristian MartinyThe project is carried out as a collaboration between UCPH and the Elsass Institute.