Disability and creativity: Parkinsons performers, poets and playwrights

 

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My sister Tricia says that she was told at school that she could not sing. So she never did – until much later in life when she was diagnosed with Parkinsonism. Like most people, all I knew of Parkinsons was that it makes people tremble, sometimes violently, and that those who suffer it can be intimidated and embarrassed because they cannot control their bodies as others can. In fact, the physical effects of the condition are much greater, since it can affect muscle control in any part of the body, including muscles that enable us to breath, to speak – or to dance or sing.

 

Well, the girl who could not sing has discovered that, indeed she can. And that she can dance, perform in public, contribute to creative projects, and to address doctors and researchers about the beneficial effects of singing and dance for people with Parkinsons. All because of Parkinsons.

 

The East Suffolk Skylarks choir of people living with Parkinsons rehearsing at Snape Maltings.

A few years ago, Tricia heard that a musician called Amy Mallett had organized two choral groups for people with Parkinsons, their spouses and families, one in Ipswich and the other at Snape Maltings (home of the Aldeburgh Festival established by Benjamin Britten and Peter Pears). Amy is a composer, theatre-maker and arts-health practitioner. Jan and I first saw Amy and her Suffolk choir in action in 2019 at Snape, and at Aldeburgh, nearby on the coast. The choir had gathered at Snape on a bitterly cold, windy coastal Suffolk day for a final rehearsal before performing a programme of sea shanties on a beach bandstand as part of the Aldeburgh Festival. We watched Amy take them through their warm-up exercises, important to maintain as much muscle tone and lung function as possible, and then rehearse their songs. We learned that, although the vocal abilities of the performers varied, that did not matter because the group sang for one another as well as for their audience. So, if one singer missed a note, or could not summon the strength to sing, the team covered for that performer.

 

Tricia in the rehearsal room at Snape

At the end of the rehearsal, Amy told the group that she was concerned that the harsh weather might pose too big a risk to the performers, but that she would let the group decide. Hands were raised and the performance went ahead. Suffolk weather would not stop this choir’s moment on the stage. We all boarded a bus for Aldeburgh. Even a North Sea wind did not deter them as it carried their songs along the shingle beach. Their excitement at performing for an audience was inspiring.

 

Boarding the bus to Aldeburgh

Celebrating success on a windy beach

Tricia told us that Amy and her collaborators Nicola Wydenbach, an operatic soprano and Director of Training for Sing to Beat Parkinsons; Danielle Teale, a dancer and founder of Dancing with Parkinsons; and Sarah Lewis, a dancer and yoga teacher and co-director of Glass House Dance, were planning an opera-dance-performance piece.

 

The subject was the life of Margaret Catchpole (1762-1819), a domestic servant born in Suffolk. While she was working for Elizabeth Cobbold, a member of a wealthy Ipswich brewing family, Margaret fell in love with a sailor-smuggler William Laud. Margaret must have been quite a lady, since two men, William Laud and John Barry, fought for her affections. Literally fought, since Laud shot Barry and became a fugitive. In 1797 Margaret stole one of the Cobbold’s horses and rode it to London where she had heard Laud was living. She was arrested and sentenced to death, a sentence that was commuted to transportation to the Australian penal colony for seven years. Nothing daunted, Margaret escaped from Ipswich gaol, but was arrested again three years later on a Suffolk beach. Again sentenced to death, again commuted to transportation, Margaret arrived in Sydney in December 1801. She prospered and remained in Australia until her death. Her letters are important documents of the history of Australia.

 

The process by which this work was created is unusual. Many creative types are fiercely egocentric and determined that their work be their own. To the contrary, the Margaret Catchpole project was been a collaboration between the members of the Suffolk and London groups and Amy, Nicola, Danielle and Sarah. All – performers and professional musicians and dancers  –  have contributed ideas and have participated in writing the work.

 

The plan had been for the two Suffolk groups to team up with a similar choir in London to perform the opera at the Royal Opera House. Covid-19 scuppered these plans, and for a time activity ceased. This was a great setback for the Parkinsons performers. Tricia told me that her lung function deterioratedduring lockdown because she had stopped singing. But nothing daunted Amy, Nicola, Danielle and Sarah, formed a Community Interest Company to continue the work begun in Ipswich, Snape and London, CARVEcoLAB. The website is:https://www.carvecolab.com/

 

Rehearsals and creativity have continued via Zoom. One of the products of this artistic collaboration is a digital quilt, HerStory: Ev’ry Stitch in the Quilt. There is a video that tells the story of the creation of the quilt here:

 

 

 

The quilt is available at:

 

https://www.carvecolab.com/herstory-ev-ry-stitch-in-the-quilt 

 

I encourage you to explore the quilt, click on the squares and enjoy the work of Tricia and her fellow performers. Tricia’s contributions are the embroidered vase of flowers on the left and the image of sailing barges bottom right (our maternal grandfather was a sailing barge captain), but please to explore as many squares as you like.

The squares of the digital quilt look like this