Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation
Bibliographic record
Abstract
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. Stigma associated with Parkinson’s disease and dementia leads to social exclusion and health inequalities, threatening the well-being of individuals living with these conditions. This stigma stems from an assumption that these conditions impede the ability to build and maintain relationships, and therefore to participate meaningfully in society. The arts support human flourishing by opening avenues for self-expression, creativity and relationship-building, and provide an opportunity for persons living with these conditions to be directly engaged in research initiatives as the experts of their own experience. We are researchers who use artistic and creative media to challenge negative representations and misperceptions of Parkinson’s disease and dementia through the arts, and to involve persons living with these conditions as co-creators in our research. In this conversation piece, we share examples of our work in documentary film, theatre, dance, circus and graphic novels to illustrate the transformative power of art for social change, and to discuss the challenges and opportunities that arise along the way—with the hope that it may inspire others to explore the intersection of the arts and neurodegenerative conditions.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.006 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".