The Methodological Challenges of Research into Dance for People with Parkinson's

Abstract

Parkinson's is a neurodegenerative disease that affects one in 500 people. It is a condition that affects the ability to initiate movement, to keep movement going and to stop movement voluntarily. Often, symptoms manifest themselves as limb tremors, rigidity of muscles, slowness of movement, a lack of co-ordination and difficulty in balancing. Many people with Parkinson's fall regularly and many feel socially isolated. There is no cure, and drugs to alleviate symptoms can be unreliable, sometimes even resulting in involuntary movement (dyskinesia) and hallucinations. There is a small but growing network of dance practitioners who deliver group dance sessions to those with Parkinson's. Evidence suggests that temporary relief of some symptoms is afforded by dancing to music and that dancing aids some people with Parkinson's to cope better with everyday actions. Most dance practitioners, however, approach sessions as a way for people to engage in an artistic and social practice. This paper was written at the start of a mixed-methods research project carried out in conjunction with English National Ballet, whose Department of Learning piloted twelve dance sessions for people with Parkinson's based on Nureyev's Romeo and Juliet. It discusses the tension between characterising dance as a rehabilitative therapy and perceiving it as an artistic and social practice. Most Parkinson's research has focused on finding a cure through neurological, biomechanical and pharmaceutical explorations. There has also been a reliance on numerical data for quality of life reports. In addition, the majority of research examining dance for people with Parkinson's has used quantitative methods and has focused on clinical benefits afforded by dance. The dominance of, and perceived need for, ‘hard’ scientific research methods and analysis prove a challenge to the qualitative researcher, who comes with a different viewpoint on how we know and understand the world, and with different ways of researching. The paper will argue that a dance researcher with a different methodological base can also offer potentially useful insight into the individuals who have this neurological condition, an insight different to that offered by quantitative research. Using sociological tools, such as interview and observation techniques, the qualitative researcher may examine participants’ lived experience of dancing with a body that moves in an unpredictable and atypical manner, as well as analysing the context in which this experience takes place. There is a need to focus attention on the dancing person, rather than merely on his or her disease. The paper reviews the literature on dance for people with Parkinson's, as well as outlining the traditional methodologies used to examine the disease and its symptoms. In doing so, it identifies the gaps in knowledge that could be explored through qualitative approaches, as well as how such approaches may be of use in strengthening ideas proposed by scientific methods. Through scoping arguments made by disability studies scholars, the paper goes on to advocate for a qualitative approach that critically engages with context, language and actions, but that also acknowledges the materiality of the body. By placing the person and his or her experiences at the centre of research, it argues that a qualitative study is well placed to examine how a person can ascribe value to dance as an artistic and social practice, while attempting to cope with a debilitating condition through dancing.