<p>Parkinson’s disease and dementia are highly stigmatized, creating social exclusion and inequality by depriving persons living with these conditions of their human rights and threatening their health, well-being, and quality of life. Challenging the stigma associated with these conditions is a key public health priority across national and international settings, and arts-based approaches are advocated to achieve this. We are researchers who use artistic and creative media including documentary films, research-based theatre, dance, circus and graphic narrative to challenge dominant and oppressive cultural and social norms, and to imagine and affect inclusive, compassionate, and socially-just approaches to supporting people to live well with neurodegenerative conditions like dementia and Parkinson’s. This includes fostering opportunities for co-creative engagement with people living with these conditions, to promote their inclusion as co-creators rather than subjects in research initiatives. In this conversation-style article, we draw on our qualitative research and experiential knowledge to reflect on the challenges and opportunities regarding arts-based research with people living with Parkinson’s disease or dementia. We share examples from our own work, across a range of artistic approaches, to illustrate the transformative potential of the arts to affect social change and to bring to light the tensions that arise in co-creative processes. Through this conversation, we hope to inspire and equip others to draw on the power and complexities of arts-based approaches for the co-production of knowledge to transform societal representation of neurological conditions and to foster human flourishing.</p>

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Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation

  • Naila Kuhlmann,
  • Pia Kontos,
  • Maria Bee Christensen-Strynø,
  • Stefanie Blain-Moraes

摘要

Parkinson’s disease and dementia are highly stigmatized, creating social exclusion and inequality by depriving persons living with these conditions of their human rights and threatening their health, well-being, and quality of life. Challenging the stigma associated with these conditions is a key public health priority across national and international settings, and arts-based approaches are advocated to achieve this. We are researchers who use artistic and creative media including documentary films, research-based theatre, dance, circus and graphic narrative to challenge dominant and oppressive cultural and social norms, and to imagine and affect inclusive, compassionate, and socially-just approaches to supporting people to live well with neurodegenerative conditions like dementia and Parkinson’s. This includes fostering opportunities for co-creative engagement with people living with these conditions, to promote their inclusion as co-creators rather than subjects in research initiatives. In this conversation-style article, we draw on our qualitative research and experiential knowledge to reflect on the challenges and opportunities regarding arts-based research with people living with Parkinson’s disease or dementia. We share examples from our own work, across a range of artistic approaches, to illustrate the transformative potential of the arts to affect social change and to bring to light the tensions that arise in co-creative processes. Through this conversation, we hope to inspire and equip others to draw on the power and complexities of arts-based approaches for the co-production of knowledge to transform societal representation of neurological conditions and to foster human flourishing.