HOME/CARE – Parwinder writes

Over the last 6 months, Coney’s brilliant Trainee Producer, Parwinder Kaur, has been working across our programme on a wide range of projects. Here, Parwinder takes a deep-dive into our project in-development, HOME/CARE.

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HOME/CARE is a work-in-progress digital piece first presented by Coney in July 2021, following a five-month collaboration between Coney, The Bureau of Investigative Journalism (TBIJ) and Contemporary Narratives Lab. HOME/CARE was inspired by the bureau’s recent reporting into the social care crisis in the UK. 

Screenshot from HOME/CARE digital game.

The inspiration

HOME/CARE was inspired by two key articles published by the Bureau; behind-the-scenes reporting and transcripts; and interviews with disabled activists, care workers and the wider public. 

The first article, Revealed: Thousands more deaths in home care during pandemic, focuses on the deaths of people in the home care system, and how many of them are not reported to the Care Quality Commission (CQC). The low pay and poor conditions in which care workers have to work also caused many to quit their jobs. Fazilet Hadi, of Disability Rights UK, has said, “We know that many people receiving social care experienced cuts to their care and the link between these reductions and the higher rate of deaths also needs exploring.”


Source: Care Quality Commission via The Bureau of Investigative Journalism.

Not only was there poor testing, staff shortages, and a lack of adequate PPE, but Gavin Edwards – Unison’s senior national officer for social care – told the Bureau that, “many have been under significant pressure to carry on when they should have been isolated because employers didn’t offer proper sick pay.” 

The second article, Revealed: Thousands of care jobs pay below living wage despite promises, looks at the conditions in which carers are forced to work, with added pressure from the pandemic and little to no funding support from the government. It highlights low pay and the impact on care workers, as well as the consequences on the vulnerable people requiring care.

The majority of care workers are paid less than minimum wage, yet their demand has only increased during the pandemic. Some are unable to cover even their most basic needs or have some money set aside for emergencies. One care worker told the bureau that she was recently injured on the job but, because her work has no occupational sick pay, her family has to survive on a meagre £96.35 a week. It not only affects their finances, but their mental health as well. They feel undervalued as well as a lack of respect. Most carers are not even paid for their travel time, which they are supposed to be.

Playtest and Scratch

As a result of the collaboration and research, Coney team devised a game on Twine and some interactive activities to spark discussion of and insight into the UK’s social care system. The playtest events took place via Zoom in July 2021, consisting of a presentation by Director Rhianna Ilube, as well as three short games: Home-mapping, HOME/CARE (on Twine), and SICKNESS or MISTAKE?. 

Home-mapping: a short ice-breaker activity. In pairs, participants were asked to familiarise themselves with the home space of their partner, whilst navigating increasing limitations of communication.

HOME/CARE: a solo Twine game which took players through a tour of the social care system, inspired by anecdotes and testimony from the bureau’s reporting and interviews.

SICKNESS or MISTAKE: a 3-player activity which prompts individuals to reflect on their own workplaces and how illness or mistakes are treated, in comparison to the pressures placed on care workers. 

Screenshot from HOME/CARE twine game.

Audience response

Participants were most shocked by the revelation that care workers are being paid less than minimum wage for night shifts, despite the increased responsibility and often not having overnight arrangements. Something else that was raised was the inability of many workers to take time off work when sick, due to the financial pressure of receiving no sick pay. 

Some participants shared comments and thoughts:

People being asked to go into work even when feeling sick or when a partner had been asked to self isolate. Having to choose whether to follow gov guidelines or your employer’s

It feels quite empowering just to share these stories about care. The more we talk about them and talk about the experiences, the more we can keep it on the agenda. The underfunding of care is an absolute scandal and we should never stop banging on about it until it changes.

Reflecting on the collaboration as a whole, Andre Piza (co-founder, Contemporary Narrative Lab), said:

There have been two levels of investigation in this project. One about domiciliary care during the pandemic and another about how we can collaboratively formulate stories that are happening now, but that are invisible to a lot of people to whom it matters. From those with the lived experience to the artists and journalists who knew very little about it when they started the investigation, how can we all be storytellers in this project? The engagement activities that we experimented with showed that, by opening up the creative process to as many stakeholders as possible, we can create a strong sense of belonging to the world that emerges during the investigation. This is a crucial aim for us because sharing the reality formulated in a new story is a powerful way of bringing people together, creating empathy and social trust.

Artistic Director of Coney, Tassos Stevens, also shared his reflections on the playtest and collaboration:

The scratch of Home/Care was incredibly exciting, with a zoomful of playing audience from across the country, many having experience of the care system including disabled activists who’d contributed to its making. It was expertly directed and written by Rhianna Ilube and quite startling to play, a jolt for someone like me who’s been lucky not to need care (yet). And the reflection and conversations it provoked afterwards were electric, charged by the gathering of people in the room. We at Coney are really excited about the piece and its impact, and keen to explore how it can be developed further and reach wider audiences. It’s also been fantastic to build a collaboration with the Bureau, brilliantly facilitated by Contemporary Narrative Lab. More soon.

My thoughts

Something else that we reflected on was the possibility of each of us needing care in future, and therefore finding solutions to improve the disastrous state of the care system. The game and consequent discussion highlighted the cultural differences for me, as oftentimes the word “care” can have negative connotations in Black and minority ethnic communities. Children in these cultures wouldn’t necessarily consider themselves ‘unpaid carers’, but rather define it as their ‘duty’ to look after their elderly relatives. Leaving your parents in a care home could be considered abandonment, and is frowned upon. 

Graphite sketch by Parwinder Kaur.


In conclusion, we hope to invite policy makers to play these games, and to place themselves into the shoes of the carers and vulnerable people. Also, we are committing to questioning ourselves about what actions we can take to develop this project and make it more accessible, as well as finding ways to empower vulnerable people rather than victimising them.

If you have any questions or want to collaborate on future developments of HOME/CARE, feel free to email Rhianna at rhianna@coneyhq.org.

And if you’re interested in joining the Coney team as our new Trainee Producer (6-month Kickstart placement), visit this page to find out more and apply by 31 January!

CREDITS

Rhianna Ilube – Writer / DirectorCesía León-Alvarez, Chloe Mashiter, Ilhan Yonis – Game & Narrative Design
Maz Hemming – Twine Programmer
Dinah Mullen – Sound Designer
Carole Keating -Producer
Tassos Stevens – Ear 
Selma Ilube, Afreena Islam-Wright, Tassos Stevens – Voice Actors
Josephine Huetlin – Dramaturg (Twine)
Eliza Cass – Production Support
Advisors: Ellen Clifford, Peter Beresford, Sue Elsegood, Jenny Hurst, Linda Burnip, Mark Williams
Bureau & Contemporary Narratives Lab team: Vicky Gale, Rachel Hamada, Miriam Wells, Emily Wilson, Andre Piza, Robin Kwong, Glenda Cooper

This project was funded by Research England’s Higher Education Innovation Fund at City, University of London. Thank you to all the collaborators and supporters who supported us in the creation of this playtest. 

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