MAKING THE INVISIBLE VISIBLE: Exploring Life with Chronic Illness and Disability Through Puppetry

jaah 11 (1+2) pp. 117–123 Intellect Limited 2020

Journal of Applied Arts & Health Volume 11 Numbers 1 & 2 © 2020 Intellect Ltd Miscellaneous. English language. https://doi.org/10.1386/jaah_00023_7 Received 3 April 2020; Accepted 13 April 2020

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CORINA DUYN Freelance artist, writer and puppet designer

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Making the invisible visible: Exploring life with chronic illness/disability through puppetry ABSTRACT

KEYWORDS

Making the invisible visible is an autobiographical essay about living with chronic illness/disability and the power of puppetry to tell the author’s story. The author reflects on the ‘Life Outside the Box’ puppet project, which she facilitated with fellow people with disabilities. As her health is in decline, she has explored more accessible puppetry formats during mentoring with Dr Emma Fisher. The resulting ‘Invisible Octopus’ project explores her reality: making the invisible visible.

Even to herself.

illness disability puppetry invisible illness accessibility art-based research

PUPPETRY, ME AND MYALGIC ENCEPHALOMYELITIS Puppetry has been part of my life from an early age. Having developed my own style of dolls and puppets over the decades, the design and emphasis has changed significantly in recent times. After studying and working as a palliative care nurse and social care worker in the Netherlands, I became a full-time working doll artist (making artistic dolls) after my move to Ireland

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Corina Duyn

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(1989). In 1998, I taught puppet-making in a home for teenagers. One engaging, mischievous young man of about thirteen sculpted a clown’s head. When it came to making the hands, they were created as fists. I felt his sculpted fists expressed his true emotions of anger and fear. This experience became the pivotal moment where I realized the power of art, especially the power of working with clay. The clay ‘does not lie’. The deepest fears, joy, wishes and challenges appear from our hearts, our minds, through our hands into the clay.

Unfortunately, I did not get to finish the project with the young people as I became very ill with the neurological illness myalgic encephalomyelitis (ME). In a very short time, I lost the ability to look after myself, to walk properly, to sit up and talk, to remember, to read, to write, to prepare my food or to do even such simple tasks as open a tube of toothpaste. In terms of my work, I lost all finer skills to hold my tools and to manipulate the clay. The total lack of energy and being in constant pain made creating my dolls and puppets impossible. As a result, my creative output changed dramatically both in substance and intensity. I made quick drawings, mainly of eggs, later of birds. I wrote on scraps of paper, the words at times a peculiar combination of Dutch and English. Later I played with paint, made paper collages, slowly trying out plasticine, eventually back to using clay. These creative explorations were done minutes at the time, just once a day. Unwittingly, I created a visual and written account of this journey, of my utterly changed existence (Duyn n.d.). One emerging sketch is that of a marionette puppet with a hand holding the cross. These words are written over the image: A puppet, not a great drawing, but […] the puppet is me with M.E., I have little or no control over my body. WHO is the hand who keeps me upright, makes me walk, makes me move gracefully, or lets me stumble at times, makes me stand my full length or let me buckle at the knees, makes the arms move or leave them hang like useless objects.

Who is the hand that has control?

What is the hand that holds the cross and moves ‘my’ strings at its will?

Can I become the hand over M.E., have control over me?

Hand, whatever you do, don’t drop me altogether, hold on, but stop playing tricks.

This early reflection undoubtedly, but not consciously, influenced my puppetry work of the past few years.

LIFE OUTSIDE THE BOX, DISABILITY PUPPETRY PROJECT In 2013, after accepting that full recovery was not within my grasp, I fulfilled a long-held dream to attend a part-time college course in Disability Studies. A year or so later, I became an active member of the Irish Wheelchair Association (IWA – an organization for people with physical disabilities). While attending the IWA Resource Centre, the then Centre Coordinator asked me to facilitate a puppet-making project. We received funding from Create – Artist in the Community Scheme, funded by the Arts Council of Ireland. Our group consisted of twelve people with a variety of disabilities: acquired brain injury, multiple sclerosis, polio, congenital birth defects and ME; ages 27 to 72. Over the course of eight months, we created nine marionette puppets, a large ‘disability’ box and a large hand to help us out of the box. I had not realized at the

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time that this might be the hand in my drawing at the start of my illness. We documented our project in a blog (Life Outside of the Box 2016), a book and a short film in which puppets were stepping out of society’s disability box. This theme came about during discussions while creating the puppets.

It proved to be of immense benefit that I knew the participants in advance of starting the project. Some were unsure about their ability or interest to create a puppet, but all came on board in some way. I invited one woman to sit alongside us and write down snippets of our conversations. Many funny anecdotes were recorded and published in our book. She took great pride seeing her press release appear in several newspapers. Others took on the role of decorating our box, taking photographs or inviting a speaker to the official public launch of our project. All aspects were of equal importance.

I drew on my personal experiences of adapting work methods. For one young woman who has no lower arms but is able to hold a pen between her elbows, I adapted the sculpting tool and brush by adding a layer of Milliput epoxy putty. I moulded the putty until the tools fitted well within her elbows.

By adding a layer of wet DAS clay to her wheelchair tray, we were able to put the to-be sculpted head base onto this wet clay. This allowed her to do a lot of the sculpting herself. Although we all had staff to support us, it was extremely important to me that the puppets were made mainly by the participants, as the character of the puppet has so much of the maker in them. I also adapted the cross so she could animate her beautiful finished puppet. We moulded a plaster of Paris socket over her upper arm, a tubigrip protecting her arm and reaching up to her shoulder. Tools were adapted in the same manner for other participants.

I was aware of the unease of one member who has an acquired brain injury to work in a large group. As the process to make a full puppet with him separately from the group would take too long, I invited him to make the large paper-mâché hand. I, or a staff member, worked one-to-one with him. It was so encouraging to see his pride. He was totally engaged in the process and related the work to his previous profession as a chef.

Encouraged by my motto that ‘there is always a way to do the work’, one man with MS who has very little strength left in his hands asked for sandpaper to be taped to the table. He sanded the clay shoes of his puppet by rubbing them over the sandpaper, holding it with both hands. A young man realized that if he did not close the scissors fully, he was able to cut the clothing for his puppet by himself. This was a total revelation to him.

For me it was, and always is, important to have puppets portraying the maker’s individuality. Of course, basic creative ‘rules’ apply for a puppet to have functionality. It was the journey to make the puppets, not the outcome, which mattered. Over the course of the project, I witnessed a shift in focus from disability to ability. Skills were exchanged, and as a result, the group became more cohesive. Each week the puppets’ personalities and stories became more profound. One participant said that his puppet took on its ultimate personality because of the obstacles he faced along the way.

Being in this group, busy with our hands, there was a great sense of ease to talk about our lives, our challenges and hopes. It was a safe place. We certainly laughed a lot, too, which was a great tonic. We all had staff members to support us with practical work. For me, this made it possible to teach again after a seventeen-year gap.

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Corina Duyn

Figure 1: Johnny Dwyer from ‘Life Outside the Box’, puppet project, facilitated by Corina Duyn with members of IWA still from the movie, 2016. Photography by Corina Duyn.

Whilst the project was about puppets coming out of their box, in reality, it was the service users that also ‘came out of their box’ to realise they could do more than they thought they were capable of. It was the most inclusive project that we ever did.

(Andrea Lloyd 2016, Centre Coordinator at time of the project)

We filmed ‘Life Outside the Box’ (Duyn 2016) in our local shopping centre.

We chose this public place on purpose, seeking interaction with the public.

Puppets make for easy conversation. People engaged with us, which was a shift from being ignored or our mental and physical ability being dismissed, as is the more common experience. For me, ‘Life Outside the Box’ represents pride, inclusiveness, freedom and empowerment. The benefits went beyond the making. One member with acquired brain injury was unable to make the puppet by himself, but partook in every step with support of a staff member.

It was still very much his puppet. On filming day, he walked around the shopping centre with his puppet. He was truly one with his puppet.

Our project certainly caught the public’s eye. There were full spread articles in the local newspapers, and we had two well-attended launches at libraries. I was interviewed on radio on several occasions. Our video has since been shown at disability film festivals in Canada and United Kingdom and for one week in our local cinema. Every three months, an adapted one-minute version is screened on Irish national television. We also hosted an exhibition with our

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Making the invisible visible

Figure 2: ‘Invisible Octopus’ project exploring the power of an invisible octopus over life lived with chronic illness, 2019. Photography by Corina Duyn. puppets and other creative work by the group and individuals. We celebrated our ability. I believed, and still believe, that the project broke many boundaries and had great potential to be used further as a communication tool about disability, for example, in schools. It saddens me that these educational opportunities noted by the then Centre Coordinator have not been followed up by the person now in charge. However, the message of ‘Life Outside the Box’ has lived on through the invitation by Emma Fisher to give a talk at the first Broken Puppet Symposium (2017) in Cork, Ireland. This was followed by invitations in 2018 to give the keynote at the Broken Puppet 2 in Bath, UK, and talks in Nottingham, Bristol and Cork. I gave further talks via Skype in Brazil and Chile and have continued to teach puppet-making although presently only via giving students access to my distant learning course material.

PUPPETRY AND EMBODIMENT OF MY OWN DISABILITY Since ‘Life Outside the Box’ and being immersed in the ‘Broken Puppet’ symposia, I became much more consciously aware of the power of puppets to explore the issues of illness and disability and to bring our experiences to a wider public. As in my teaching and facilitating puppet-making courses, I also leave my own puppets to dictate their specific character. Our underlying emotions make their way through our hands into the clay and come to the fore in the puppet. A very powerful experience, and I feel of great importance to give creative space for this process to happen.

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Corina Duyn

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‘The Girls’ (2015–17) are string marionettes as in ‘Life Outside the Box’.

They emerged as a reflection of each other: one using canes to walk, the other freer in her movements (see images of ‘The Girls’ on my blog at https:// corinaduyn.blogspot.com/2019/11/invisible-octopus-2-puppet-design.html).

One is my reality, the other portraying the invisibility of chronic illness, but also the choice to have freedom of mind. Due to the increasing inability to holding the marionette’s cross for any length of time, I designed ‘Póilin’ during 2017. This ‘wheelchair-lap-puppet’ can sit independently, and I can animate her via the rod in her back. ‘Póilin’ embodies the almost meditative quality of my life lived in enforced solitude. She shows peacefulness, but at the same time seems to have a strong ability to have her thoughts heard.

A sharp decline in my health during 2019 made sculpting a puppet more challenging. I needed to examine what kind of puppets I could still create and animate. I received invaluable support in this quest from Dr Emma Fisher through a mentoring bursary funded by Arts & Disability Ireland. We explored accessible puppetry formats like shadow puppetry, and I wrote a film script using my existing puppets as starting point. ‘Póilin’ is the narrator while ‘The Girls’ portray different aspects of my experience. This bursary also enabled me to pay for practical support. We created props including a hospital bed, recliner and a wheelchair. Observing ‘The Girls’ in their hospital bed and wheelchair created an unsettling emotional response, which was in total contrast with the pride felt of creative achievement.

Exploring puppetry with an easier access point, Dr Fisher suggested shadow puppetry. The word shadow triggered the memory of an unfinished book I had been working on years ago. A fictionalized story about my greatgrandmother’s spirit whose presence I felt on my body like the tentacles of an octopus. I lived in her shadows: the shadows of an invisible octopus. This sensation also embodies ME: the reality of un-diagnosable pain, of something invading my body, the many cognitive problems and not being in control of my movements, of my life. As if an ‘invisible octopus’ controls my life. The octopus became the hand in the drawing I made all those years ago: ‘Who is the hand that has control. […] What is the hand that holds the cross and moves strings at its will’.

With support I made a fabric glove puppet octopus. It was a joy to realize that I could sew by hand while in my recliner chair. The more I worked on creating the puppet, the more ‘Octopus’ became the story. The octopus’s tentacles are also representative of different aspects of the Irish healthcare system.

We are pulled and pushed, our voices often taken away or simply ignored.

Being pushed further into the shadows, into the darkness. We become invisible. To not fully disappear, I will continue to explore ways to tell my story and that of my fellow hermits around the world. I am very excited to have been introduced to shadow puppetry using an overhead projector. The format is very accessible to me and has the immense power of conveying strong imagery.

Throughout the mentoring period I delved deep into the reality of my existence. Creatively, it was an amazing opportunity to explore, using different forms of puppetry in one project. Emotionally, it was profoundly challenging.

My world is becoming increasingly smaller. I am creating my world in puppet size. To remain part of the world beyond my walls I share my work and experiences on social media (Duyn 2019). Through ‘Invisible Octopus’, I hope to make the invisible visible. Even to myself.‍

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Making the invisible visible

REFERENCES Duyn, Corina (n.d.), ‘Corina Duyn’, https://www.corinaduyn.com/site/.

Accessed 6 April 2020.

Duyn, Corina (2016), ‘Life outside of the box’, YouTube, 11 July, https://www. youtube.com/watch?v=Kv80lXXrgWc. Accessed 1 January 2020.

Duyn, Corina (2019), ‘Invisible Octopus’, Little Wings, 2 December, http:// corinaduyn.blogspot.com/search?q=Invisible+Octopus. Accessed 20 December 2019.

Life Outside of the Box (2016), ‘“Life outside of the box” puppet project’, http:// lifeoutsidethebox-puppetproject.blogspot.com. Accessed 6 April 2020.

ME Advocates Ireland (2018), ‘Information pack on the situation of myalgic encephalomyelitis (ME) patients in Ireland’, http://meadvocatesireland. blogspot.com/2018/01/me-information-pack.html. Accessed 6 April 2020.

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Duyn, Corina (2020), ‘Making the invisible visible: Exploring life with chronic illness/disability through puppetry’, Journal of Applied Arts & Health, 11:1&2, pp. 117–124, doi: https://doi.org/10.1386/jaah_00023_7

CONTRIBUTOR DETAILS

Corina Duyn is an artist, writer and puppet designer. Her creative work is informed by nature and life with the chronic illness/disability ME. Corina facilitated puppet-making projects, including with people with disabilities.

She has given lectures in person and via Skype about puppetry and disability, including as keynote speaker at Broken Puppet 2, and as guest artist at Diplomado Muñecoterapia, Chile.

Contact: Little Wings, Co. Waterford, Ireland.

E-mail: littlewings@corinaduyn.com https://orcid.org/0000-0002-5031-9568

Corina Duyn has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.

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