Up to now, the programme has been aimed at young people with CF across Ireland aged between 13-16. Participant recruitment is led by Cystic Fibrosis Ireland (CFI) with support from CF units in children’s hospitals and acute settings.
The overall aims of the programme are to increase access to the arts for young people with cystic fibrosis and to reduce their social isolation through participatory arts engagement. Within this, the programme has the following objectives:
- Connect young people with CF in an online creative environment
- Support the development of creative skills
- Explore diverse artistic avenues for making work in the online space
- Create an opportunity for participants to share their work with a wider audience.
The programme supports creative connections between young people with CF through online mediated meet-ups facilitated by professional artist mentors, digital tools and an offline postal exchange system.
An Cosán Virtual Community College provides the online technology and moderates the online sessions. The young people connect with the project artist on Saturday mornings via Adobe Connect’s virtual classroom. Before the project starts, families take part in an initial online meeting to get to know the artist and to get used to the technology.
Seven Summer Stars
The pilot project ran from March – May 2019 with seven participants, led by Helium Associate Artist Rachel Tynan. The project supported a group art journaling experience and included six online group workshops and offline art making. Participants also connected online between workshops using Google Classroom to share artwork from project journals and to watch art tutorial videos created by Rachel.
Fostering connections between young people with CF was at the heart of the project. Group identity was explored through visually mapping what the young people had in common, initiating group artwork, and encouraging participants to name the group and to collaboratively design their own logo. Through a word association game and a virtual poll, the young people decided to call themselves Seven Summer Stars and they all received their own logo t-shirts in the post. Breakout rooms enabled smaller group conversations so that participants could get to know each other better.
‘At the beginning we did that drawing where we connected what we had in common and I think that really just started to connect us. And then as we moved on we kind of became good friends and we haven’t even met each other in real life.’ – Participant
To support the remit of increasing access to the arts for young people with CF, Helium partnered with the Irish Museum of Modern Art. Participants explored artworks from IMMA’s Freud Project ‘Gaze’ exhibition via a pre-recorded gallery experience, led by curator Mark Maguire with Rachel. Artists with CF who use their life experiences as inspiration for their work was another area of exploration.
‘It has renewed her artistic interest hugely since she started [the project]’ – Parent
The beginning of each virtual workshop was an optional artist ‘drop-in’ session with Rachel where participants could talk about the art pieces they were working on and how they might progress their ideas. A Ladibug document camera operated by Rachel allowed for high definition online art demonstrations. Rachel also posted art packs to the young people and these materials were used in their journaling and artworks. By the end of the project, the young artists had created a series of individual artworks which became part of a group exhibition.
The World of Scribes
‘It is a land of magic. There is no sickness or hunger. The clouds are colourful if you imagine them to be. The clouds rain sweets and towns are built from this. If there are enough houses there are no homeless and everyone has the same amount of money. The environment is healthy, where all illnesses can be cured…’ – Young people conjure a world, Workshop 1
Phase II was led by Hungarian theatre-maker Eszter Némethi, previously artist in residence on Helium’s hospital-based Cloudlands project. This iteration explored the creation of a new world through performance, games, group storytelling, writing and artmaking, which led to the production of a collaborative, interactive publication called The World of Scribes.
WOS took place from October 2019 – March 2020, bringing together some of the previous participants alongside newcomers, and included nine online sessions and offline art making.
Eszter began with an invitation: what kind of world would participants like to make and how might we communicate in this world? The multiple-screen format was transformed into a performative space to connect everybody. Wearing carnival-style masks gifted by Eszter, objects received in the post were passed ‘between’ participants, rituals were invented with hand signals and clapping, and a world was initiated that became their own.
‘Worlding’ was realised in many different ways. Participants created blind drawings of imaginary worlds which Eszter put together as an online map of the world. The chat box and virtual notepad were used to populate the world with characters (from small dragons to flying pigs to Wloth the sloth), weather systems, geographies and philosophies (the world growing week by week).
‘Can’t wait to fill the world with art’ – Participant
Artworks created at home to fill the world were digitalised and then reinvented using online drawing tools. Working as a group, participants added digital art and motifs to the world using the online whiteboard. Playful instructions and postcards with participants’ story messages (‘the world will stay happy forever’) arrived in the post. Postal materials would lead to artworks which in turn were posted back to become part of the book world. In the online editing stages, acting as editors in chief, participants drew directly onto the PowerPoint proof and added text suggestions to bring The World of Scribes together.
‘We were making a world that we would love to live in’ – Participant
Seven Summer Stars
The pilot project included a public showcase of artworks at Waterford Healing Arts Trust (WHAT) in May 2019 with the young artists joining via a virtual tour.
‘I’m really excited to have a proper showcase and have my art in it. It’s not something you would do every day or something that most people would get [to do].’ – Participant
For most of the young artists, their CF experience was a key theme, with purple roses and hues populating their pictures (symbolising cystic fibrosis), thorns protruding from a body, and roots mimicking the double helix. The artwork was positive (‘My illness doesn’t define me’); starkly candid (‘Cystic Fibrosis grew roses in my lungs. Yes, they’re beautiful but, I can’t breathe’); and optimistic, with a purple butterfly signalling change and hope.
The showcase included a project film created by guest artist Linda Curtin with animator Dave Lawless, featuring some of the young people’s process work and audio reflections. A response artwork by artist Rachel Tynan was inspired by the theme of connections and featured the young people’s hands waving to each other during the online sessions.
Since the showcase, the Summer Stars have had their artworks exhibited at the CFI celebration for the VHI Women’s Mini Marathon and a CFI book launch, both in 2019. To date, the artworks have been viewed by over 500 people.
The World of Scribes
‘This book is a book … It is also the world itself … The book can be disassembled, displayed, touched, folded and sent.’ – “Outroduction”
The World of Scribes, created on Phase II, is an interactive publication; a treasure trove of stories, rituals, character portraits, maps, weather systems, poetry, and physically and digitally created artwork. Design and production have been co-ordinated by project artist Eszter Némethi with support from Christopher Foley of Darklab Designs.
WOS is many things: a pop-up book; a series of postcards from our world to Earth (postcard-weight pages are perforated so that readers can easily detach them); a place for games with detachable pages to remake the map of the world or to turn your bedroom wall into a mini gallery and a story generator to create new worlds; a tool for making art (pages made of pale pink origami paper can be folded into the animal characters that populate the world and there is a special recipe for a colourful sugar landscape); and a performance mask (the book jacket is a removable paper cover that transforms into the every-shaped tree mask).
An online launch for participants took place in March 2020 in the midst of the first Covid-19 lockdown. The young artists were happy to celebrate something magical at a strange and uncertain time.
A digital version of the book created by Eszter with interactive elements, downloadable games and art-making instructions will be available on www.helium.ie in late October 2020.
Online evaluation with participants was supported using Google forms which can be formatted to look bright and appealing and can be sent via a link in the chat box. The evaluation methods were introduced when the young people felt comfortable with the facilitation team. The following methods have formed part of the evaluation process:
- Creative Habits of Mind: Helium received training from UK-based organisation Creativity, Culture and Education to evaluate creativity using the 5 ‘habits of mind’: Inquisitive, Persistent, Imaginative, Disciplined, Collaborative. The young people measured their creative habits before (at the beginning of the project) and after (during the final workshop).
- Warwick Wellbeing Scale: This before/after scale was completed by participants to determine whether psychosocial objectives had been met. Wellbeing parameters were scored on week 3 and week 6, using a simple 1-10 scale.
- Online comment cards completed by participants.
- Reflection templates: completed by the lead artist and project manager following each workshop.
A detailed evaluation report by the project manager following each phase is submitted to project partners. The project manager also completed a Recommendations Report in spring 2020 informed by learning from the two phases to support future iterations of Helium’s Remote Creative Health Programme.
we were the seven stars.
In a place that was
impossible and impassable.
– The World of Scribes
Fostering connections between young people with CF
The programme emphasises creative methods that can encourage a sense of community. One of the most important outcomes, as communicated by the young people themselves, was this building of connections and, over time, friendships. On the second phase, the younger participants were quite shy and found verbal interaction daunting. This group was much more at ease communicating via text box, notepad and whiteboard. Social cohesion grew through the world they were creating together and the physical rituals (hand gestures, mask-wearing) that linked everybody to the world. Both phases resulted in participants setting up their own WhatsApp groups to keep in touch, with permission from parents.
‘I thought it was really cool to meet other people with CF and have that connection. And I like how we’re sort of all in the same room at the same time and that’s comforting.’ – Participant
Giving a voice to young people’s experiences and aspirations
The projects have provided young people with an outlet to voice their philosophies, concerns, hopes, dreams and aspirations via their artworks (phase I) and an invented world (phase II). The young artists on the pilot had an open remit as to what they would like to create; by and large, they chose to express their experience of cystic fibrosis through their artworks. On WOS, their personal experiences informed some of the thematic content: their world is a world without sickness, ‘a healthy environment,’ ‘an environment where all illnesses can be cured.’ As some of the participants were quite introverted, the fantasy world also became a safe space to reimagine their experiences as a collective voice.
‘I actually have realized I really like drawing things that relate to my CF, that’s because of you guys!’ – Participant
Nurturing resolve and patience in the online environment
The programme has faced challenges, both technology and health-related. Connecting in the online environment can be frustrating: the young people and the artist are adapting to the technology and coping with technological hick ups as they get to know each other. Eszter integrated tech ‘gremlins’ into the story of WOS and hence brought humour and playfulness to what could otherwise be stressful situations. But it is the young people themselves who have shown remarkable patience and perseverance in making the online space work for them.
One participant from a rural area was not able to fully take part due to a slow internet connection. However, she became one of the most dedicated participants, viewing the recordings afterwards and contributing artwork and ideas via Google Classroom. Other participants spent time in hospital during the project but still took part, one joining from her hospital bed and another from her car on the way home from hospital. When it came to rating their own persistence (5 Creative Habits), there was an overall increase of three points over both projects.
Innovating creative approaches to online collaboration
‘Helium Arts are totally ahead of the curve with this programme.’ – Parent
In a very real sense, the programme has been an ongoing collaborative experiment, with the artists and young people learning together how to ‘be’ and make in the online space. The multi-pronged approach introduced in the pilot phase – combining real-time virtual workshops with offline making, postal packages, and an online space to connect between workshops – was hugely important as participants could not always join the live sessions due to ill health and technological gremlins. In phase II, Eszter brought a whole new set of creative tools to the online experience (performance, collective storytelling, writing, games) while retaining a lot of the elements from the pilot (individual artmaking in the home, mail art) that participants really enjoyed. Above all, the artists have been responsive to the young people’s ideas and feedback, adjusting, adapting and innovating along the way.
‘I really consider the work you’ve done together as a very powerful form of radical contemporary theatre.’ – Noémi Herczog, Hungarian theatre critic, on WOS
Documentation and Dissemination
- IMMA video series: Virtual gallery experience created for pilot participants in partnership with IMMA. Individual video guides of six artworks from IMMA’s Freud Project ‘Gaze’ exhibition were produced by filmmaker Linda Curtin featuring artist Rachel Tynan and Mark Maguire from IMMA.
- Video responses: The online launch for WOS included pre-recorded video responses by European artists and project stakeholders.
- Extensive photographic documentation of process work and artworks.
- Meet the Artists, WHAT showcase 2019: Virtual ‘meet the artist’ session with participants discussing the inspiration behind their artworks.
- Project talk, WHAT showcase 2019: Conversation and Q&A with project facilitators and partners
- Checking In, April 2020: Online event showcasing new methods of working in arts and health organised by WHAT in response to the pandemic. Eszter presented on WOS.
The World of Scribes is a limited edition publication. A bespoke pop-up version was created for project participants and partners. The book is available to buy for €10.00 with all proceeds going to Helium’s Remote Creative Health Programme. To purchase a copy email firstname.lastname@example.org
CFI Spectrum Magazine (Winter 2018 and Summer 2019); Irish Tech News (May 2019); Színház Theatre Magazine, Hungary (essay by Eszter Némethi, May/June 2020).
Seven Summer Stars: http://helium.ie/2019/07/16/seven-summer-stars-teens-with-cf-connect-on-heliums-online-art-project/
The World of Scribes: http://helium.ie/2020/03/26/online-arts-programme-creating-the-world-of-scribes/
We made a world that is not yet finished.
We made a world that will live forever.
Between you and us all.
Cystic Fibrosis Ireland, An Cosán Virtual Community College, Waterford Healing Arts Trust, Irish Museum of Modern Art (IMMA)