The Covid Chronicles: connecting performers with Parkinson’s disease

Interviews

Author: Johanna Stiefler JohnsonPublished: 17 December 2020

Parkinson's LifePrep: Parkinson's LifeCook: Parkinson's LifeServes:

Hands raised on camera in group Zoom call

We hear from Amy Mallett, a UK arts health practitioner, and Peter Thompson, who has Parkinson’s, about ‘HerStory: the Covid Chronicles’ – an opera project keeping performers with the condition connected online during the pandemic through music, video and creative writing


Covid-19 may have diverted many plans, but it didn’t stop UK musician and composer Amy Mallett and her colleagues from continuing to work on HerStory, an opera project for performers living with Parkinson’s disease.

Created in 2019 by artistic collective CARVE coLAB, the opera originated as a series of workshops supported by UK arts organisations, Arts Council England and Snape Maltings. Its story centres on the colourful life of Margaret Catchpole – a historical character from 18th-century Suffolk, England.

When the pandemic paused plans to perform the work at the Royal Opera House, the project was re-envisioned as HerStory: The Covid Chronicles, developed across screens in Suffolk and London, UK, to accommodate social distancing. We spoke with Amy, a project leader, and Peter Thompson, a participant who has Parkinson’s, to learn more about the project’s successes, challenges, and future goals.

What was the hardest hurdle to overcome when moving the project online?

Amy: Our biggest challenge was encouraging participants to engage with the project online. Many were put off by the technical requirements of connecting via remote video conferencing or lived in rural areas with unreliable wifi connections. We also had to think hard about how we would interpret aspects of the opera through the media of film, an approach we were not all familiar with.

Peter: We have continued the singing and dance sessions via Zoom and have done our best to make those work, but not having the means to meet up as we used to is very frustrating. The project coordinators have worked very hard to keep us all going.

I think the biggest challenge for me was to keep my voice working. Over the last nine months Parkinson’s began to affect my swallowing mechanism, to the point where my voice practically disappeared, and I couldn’t eat or drink without aspirating. Fortunately my voice has come back, somewhat weaker, and I can take part in the group activities.

Tell us about the themes of the opera and how these were translated into video form?

Amy: The reason we know so much about Margaret Catchpole’s story is through the letters that she exchanged with her former employer, Mrs Cobbold, so letters are a major theme in the work. One of our participants, Jennie, found transcriptions of these letters. She features in the film reading some of the words Margaret actually wrote, which really brings her character to life.

Capture was an easy theme to represent, with many of us feeling like prisoners in our own homes for most of this year. In one session we vented our frustrations by using metal household objects as percussion to imitate banging on cell bars.

Water is also strong theme in HerStory – a symbol of separation, longing and the ebb and flow of time. The group represented this through photography and film of watery scenes in their local environments.

How did participants find the online workshops?

Amy: We were so fortunate that our participants were happy to have a go at everything we threw at them – from learning songs to dance improvisation and photography. We set optional tasks in-between each session to keep the ideas flowing, and some said that they felt more engaged creatively with the project than in our earlier face-to-face sessions. It was lovely to receive creative contributions such as photographs, creative writing and film clips via email and post, and weave these together into a finished product.

Which creative tasks did you enjoy the most?

Amy: Some of the most fun experiences we had during the workshops were experimenting with the webcams. The group used cling film and cellophane to create watery effects, and we played around with proximity to produce interesting imagery using our hands and pieces of paper. For me, the creative writing and spoken word aspects were most powerful. One viewer remarked that the finished film was like “a moody audio-visual poem”.

Peter: I have enjoyed everything we have done to contribute towards the opera, the highlight being our performance with an audience. It has been immensely stimulating and has given all of our participants a real boost.

What was the biggest impact of the project for you?

Peter: The climax of the project came last summer, when we performed a scratch version of HerStory at Snape Maltings, which was a great experience. If you have seen the videos online, you’ll appreciate how successful it was.

Amy: In the next stages of our HerStory project we had planned to bring together members of Parkinson’s communities in London and Suffolk to collaborate. Despite our slight change in direction, we were still able to make this happen, even though nobody left their homes. I think that all the artists and participants involved now feel empowered that we can work together creatively to keep the HerStory project going, even if it takes a more digital direction for a while.

How has Covid-19 has impacted creative professionals who support people living with Parkinson’s?

Amy: I know that many of us have felt a great disappointment that we have not been able to continue the important work that we are so committed to. There has been a huge conflict between our responsibility to keep the groups we work with safe, but also recognising the need to keep connections and activities going. In some ways it has made us more resourceful and resilient, determined to find a way around the challenges that the pandemic has presented.

What are your future plans for HerStory

Amy: We are still determined to take HerStory back on the stage as soon as is safely possible. However, now that we have gained some confidence working in this way, we are planning a bigger digital project in 2021 that involves a variety of creative tasks – some digital and some analogue. We’d like to tap into the different creative talents of Parkinson’s community across a range of arts, culture and craft activities, and curate the outcomes into a digital and physical exhibition.

Amy Mallett and Nicola Wydenbach leading an opera workshop in London

Amy Mallet (centre) leading an opera workshop in London, UK.

Find out more about HerStory: The Catchpole Chronicles.


Read more:

Pro cyclist to non-profit founder: Davis Phinney on life with Parkinson’s

The challenges and joys of writing with Parkinson’s

Go Back

Share this story

Comments


Related articles


US actor Alan Alda at the Australian National University

Global update

Alan Alda: Parkinson’s is “not the end of the world”

The US actor shares his experience of diagnosis

READ MORE
A patient and health care professional sit together.

Global update

“Researchers should regard patient participation as vital”

Addressing inclusivity in Parkinson’s disease studies

READ MORE
A couple in Canada

Interviews

“I wanted to help make sense of what was happening to us”

Leslie Davidson discusses her and her husband’s simultaneous diagnoses

READ MORE