04-03-2020

Patterns of Perception – People with Parkinson’s, dancers, artists and researchers share their creative collaborations in central London exhibition

Between the 4th March and 24th April, an exhibition at Central St Martins, central London, is showcasing and celebrating a unique collaboration that aimed to find better ways to dispel misconceptions and communicate real insights into the experiences of those living with Parkinson’s Disease.

The project behind this exhibition, Patterns of Perception, brought together individuals with Parkinson’s Disease, Central Saint Martins, English National Ballet, UCL and artist Ruairiadh O’Connell to explore the experience of Parkinson’s Disease. It provided a voice for lived experience of individuals with Parkinson’s Disease, and the patient-focused insights that emerged have since proved valuable both for research and in direct clinical care.

Patterns of Perception was led by two of the Centre’s researchers, Dr Rimona Weil and Dr Christian Lambert and their teams, and involved running a series of workshops ranging from textiles to dance and art. During these workshops, participants created visual diaries to reflect on their daily lives. They also worked with us to generate a vocabulary of words that epitomised their lived experience of Parkinson’s, identifying common themes: strength, resilience, fear, hope and humour. They used these words to paint textiles with these themes and as focus points in dance.

This collaborative process of interweaving science, dance and visual arts culminated in four month public exhibition at Central Saint Martins, and the English National Ballet, as well as a seven minute film documenting the initiative (see above).

Parkinson’s disease (PD) is a common, age-related neurodegenerative condition. In the UK, two people are diagnosed with PD every hour. There is a major discrepancy between what people think Parkinson’s disease is, and the actual experience living with the condition. Furthermore, there is substantial variability in the symptoms experienced between individuals, with many being invisible to the naked eye. Bridging this disconnect would help individuals with PD, their families and professionals who help care for the condition. As one participant said:

“Everyone experiences PD differently; I wish I knew what this meant earlier. I thought it was that we all take different roads to the same destination, but in reality, the destinations are all different too”

After the workshops, the individuals with Parkinson’s Disease told us that by taking part, they felt empowered to tell their story, and it allowed them to communicate that:

“It is not just a motor condition, there are many aspects to living with Parkinson’s disease”

“There is much that is visible but also much that is invisible”

Reflecting on the project, Dr Rimona Weil and Dr Christian Lambert said:

“Patterns of Perception was truly a collaborative effort and a wonderful experience to be part of. The flat hierarchy allowed the group to work cohesively and seamlessly together, listening and learning from each other and the participants. The resulting outputs merely represent the start of a journey for those who took part, where we will continue to build upon the lessons learnt to help shape and improve the broader perceptions of living with neurological disease.”

The project was funded by a UCL Knowledge Exchange and Innovation Fund.

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