Naila Kuhlmann, Rebecca Barnstaple, Louise Campbell
- Open (def: scores for unspecified instrumentation)
- Acoustic instruments
- Digital devices
Ongoing project ; example activities: 1-2 x 1.5 hour virtual sessions
- Community associations
- Neuroscience & health research
- Memory conditions (e.g. Dementia care, Alzheimer
- Physical disabilities (e.g. Cerebral Palsy, Rett
- Parkinson’s disease
Piece of Mind — Connecting Scientific Research and Lived Experience through Music
Piece of Mind uses the performing arts to synthesize and translate knowledge about Parkinson’s disease (PD) and dementia. Our participatory research-creation project brings together artists (circus performers, dancers, musicians, visual artists), researchers, individuals living with PD or dementia, and caregivers to co-create artistic works based on scientific research and lived experience. The overall goals are to:
1) facilitate knowledge creation and exchange between the seemingly disparate communities participating in the creative process and
2) create performances that can engage a wide audience on both an emotional and intellectual level, and spark meaningful conversations around PD and dementia.
We use an emergent and iterative process to identify the key themes and messages to communicate in our performances, and to ensure that multiple perspectives are incorporated along the way. Our research process has included numerous virtual workshops, facilitated discussions, and movement/music sessions to build relationships and explore both scientific and lived experience knowledge through creativity and embodiment. Rather than present a summary of the various activities we’ve undertaken, we’d like to share two examples* that could easily be applied in different contexts.
*You can find our other example here:
ACTIVITY: improvisation exercise from lived experience, to artistic representation, to scientific interpretation
GOAL: the purpose of this activity is to explore topics around Parkinson’s disease (PD) through the lens of lived experience, artistic representation, and scientific interpretation, and to facilitate mutual understanding between participants.
WHERE: via a virtual platform such as Zoom, or in person.
DURATION: 1–2 sessions ; each 1–2 hours.
PARTICIPANTS: in our project, the participants were researchers, artists (including musicians, circus performers and dancers) and people living with Parkinson’s disease. The process can easily be adapted to other target audiences.
GROUP SIZE: 3 per group: one person living with PD, one artist, one researcher. If you are working with multiple artists (ex. a musician and movement artist), you could increase the group size to 4.
1. Introduce the topic or question of interest that you would like to explore in the session. In our case, topics were used that emerged in previous sessions, including motor limitations, the invisible aspects of PD, and how PD changes one’s perception of time.
2. Process: Each person in the group has 1–2 minutes to share or present something based on the proposed topic. The person with PD begins by sharing their lived experience of the topic. The artist then responds to the experience, either directly (e.g. with voice, an instrument, movement) or by explaining how it might be represented in an artistic medium. The researcher closes the loop by providing scientific context to the experience, or new questions that come to mind from the exchange. Repeat the cycle as many times as you wish.
3. Participants are requested to keep their responses to 1–2 minutes so as to allow several cycles between lived experience, artistic representation and scientific interpretation. As the cycles progress, the process can become less defined as participants build on one another’s ideas. We use body language and improvisational games to help bridge the connection between the 3 perspectives — you can check out some examples in the attached videos.
4. If working virtually, group participants into breakout rooms. You can choose how long to make the breakout sessions; we recommend at least 15 minutes per topic. If you would like to revisit the exchanges afterwards, don’t forget to record!
5. After the activity, have a group discussion (with all participants) to share ideas and get participant feedback. If you have time, switch groups and repeat the activity based on new questions that emerge!
DESCRIPTION OF INCLUDED VIDEOS:
1. Anne, Louise, Anusha (English)
In this video, the participants discuss how Parkinson’s disease shapes one’s perception of time, and how the rhythm of life is controlled by medication. Anne, a woman living with Parkinson’s disease, begins by explaining her experience of how time fluctuates during the day. Musician Louise Campbell invites her to participate in a musical simulation of the experience, by “conducting” her clarinet playing through hand gestures. Anne raises her hands to indicate when to play faster, lowers them to indicate slower, and Louise adds texture to the music based on Anne’s other movements. After the exchange, neuroscientist Anusha reflects upon the external cues that regulate our sense of time, and how medication might affect people differently.
Translated quote from Anne (in the group discussion afterwards): “[…] it was incredible – it was as though my brain was singing. It was really, really beautiful.”
2. Serge, Caroline, Naila (French)
In this video, Serge, a man living with Parkinson’s disease, begins by explaining the motor symptoms he experiences, and how these feel in his body. Caroline, a musician, suggests an idea as to how the symptoms Serge described could be represented on violin, and improvises a short piece. Naila, who studied the brain circuitry affected by Parkinson’s disease, ends by drawing a parallel between these motor symptoms and how PD changes the communication between neurons.
Translated quote from Serge (in group discussion): “[…] she started playing the violin, and at first I had a lot of tremors, but her music calmed me […] I managed to control my body.”
3. Serge, Caroline, Rebecca, Sherilyn (French)
This video depicts a second round of the improvisational activity, in which Serge (who has Parkinson’s disease) shares how the Piece of Mind project has affected him emotionally. The musician Caroline interprets his testimonial through rhythm and voice, while Rebecca, dancer and researcher, accompanies her with a movement improvisation. Sherilyn, a PhD student studying Parkinson’s disease, explains the emotional aspects of the disease and the corresponding brain regions that are affected.
Translated quote from Serge (following an explanation from Sherilyn): “You just described me as though you’ve known me for a long time.”
4. Anne, Louise, Claire, Anusha (English)
This video depicts a second round of improvisation between Anne, Louise, and Anusha, a few weeks following the first one (example 1). This time they are also joined by Claire, a researcher and tap dancer. In this clip, Anne, who has Parkinson’s disease, conducts Louise’s clarinet playing, using hand gestures to demonstrate how she is feeling that day. After the improvisation, Anne provides context as to how this compared to the previous session.
*Please contact Naila at firstname.lastname@example.org if you’d like to know more about the project.*Read More +