An open science project gives persons with cerebral palsy more self-control
A University of Copenhagen research project has managed to significantly strengthen the self-control of persons with cerebral palsy (CP). This was achieved by challenging the CP patients’ assumptions about their own limitations and by including the CP patients themselves, their families, psychologists, neurologists and even theatregoers in the project. The method, which is known as open science, turns the traditional scientific process on its head.
“In order to help persons with cerebral palsy we need to fully understand what it means to live with a congenital brain damage. What I have tried to do is to involve everyone who is somehow affected by or has a professional stake in cerebral palsy in order to arrive at an all-encompassing understanding of the problem and to avoid the current lack of communication between researchers and professional,” says postdoc Kristian Martiny from the Center for Subjectivity Research at the University of Copenhagen.
Based on in-depth interviews with CP patients about their own bodily experiences and the limitations and possibilities it gives, Kristian Martiny has – in close collaboration with therapists, psychologists, and neurologists – developed a highly successful intervention for CP patients:
“We put the CP patients through an extremely challenging social camp that involved a skiing trip. During the trip, their mental and physical limits were tested and stretched, and they realised that they were capable of much more than they thought. This is crucial because apart from the brain damage that often causes motor and speech control issues, many CP patients tend to have a negative self-image,” explains Kristian Martiny.
The cultural lab
The underlying idea of open science is, as the name suggests, to open up the process and let everyone relevant to the research participate – and not only those who have professional stake in it. In the case of cerebral palsy, Kristian Martiny made a point of letting “ordinary people” become part of the research process, becausethe reactions that persons with cerebral palsy get from their surroundings contribute adversely to their feelings of otherness. This is why Kristian Martiny wanted to reach theatregoers and documentary audiences with a theatre production and a documentary that addressed the life circumstances persons with cerebral palsy find themselves in.
“The play Humane Liquidation and the documentary Natural Disorder, which are about Jacob Nossell who has cerebral palsy, became crucial to the research process because they both communicate what it is like to live with a disability and address difficult existential and ethical questions. The idea is that this alternative means of communicating research may contribute to overcoming prejudice and preconceptions about disabled people, but also, hopefully, give persons with cerebral palsy a sense of empowerment in that they are part of a process which has the potential to change the way they are viewed by society,” says Kristian Martiny.
And he has the documentation to prove that the audiences’ view of Jacob Nossell and what it means to live with a congenital brain damage changed after the performance of the play Humane Liquidation.
“Before the play was performed, we picked 15 people at random to act as a focus group. They were interviewed just as thoroughly as the CP patients and underwent psychological testing before and after the performance. During the performance, they were asked to answer questions about how they perceived Jacob Nossell and his situation, and we can see that people respond very differently to a play than to traditional types of research communication – the play clearly had a very positive effect on the members of the focus group who gradually began to see things from Jacob Nossell’s point of view and not least see him as an individual they could identify with rather than as a disabled person.”
Read Kristian Martiny’s Phd thesis Embodying Investigations of Cerebral Palsy: A Case of Open Cognitive Science
Postdoc Kristian Martiny
Center for Subjectivity Research
University of Copenhagen
Phone: + 45 27 63 85 62
See a trailer for the documentary Natural Disorder about Jacob Nossell: http://www.dfi-film.dk/natural-disorder
The interview design
A crucial aspect of Kristian Martiny’s research has been the interview design which has given him insight into life with cerebral palsy. The interview design is a result of a collaboration with colleagues from philosophy and has been published in the journal Phenomenology and the Cognitive Sciences. Read the article Framing a Phenomenological Interview: What, Why and How.