Guest Post by Lucy Bergonzi
Books Beyond Words is a publisher of picture-led books and resources for people with learning disabilities. These wordless stories, dealing with many of life’s issues, are designed for people who find it easier to read using pictures rather than words. I’ve been one of Books Beyond Words’ illustrators since 2015.
The Covid pandemic has affected all of us to a greater or lesser extent, but for people with learning disabilities the crisis has been particularly difficult and damaging. The British Medical Journal says ‘the Covid-19 pandemic has had a devastating effect on people with learning disabilities across the world’, and reports say there are higher levels of hospitalisations and deaths amongst the learning disability community.
Books Beyond Words recognised the enormity of the crisis very early, and at the beginning of March 2020 they approached me with a new project. Beyond Words’ Founder and Chair Sheila Hollins was keen to put a story together to show strategies for looking after oneself when ill with a virus – not just Covid but viruses in general. We were partnering with NHS England to develop the story, and with the situation developing so fast at the time, we would have to work quickly – there was a sense of urgency about conveying a public health message.
In 2017-18 we had produced a book about social isolation called ‘Belonging’, in which we created two characters, Kali and Stefan. Both were initially lonely, and through their developing friendship they became less isolated. Beyond Words proposed using these characters for the new project, as I had already created and established them. They each have an implied mild learning disability or autism, and both lead fairly independent lives.
In ‘Beating the Virus’, Kali is unwell and she contacts Stefan for help. We see him bringing shopping for her, putting it away, and cleaning and sanitising after himself. I drew the story in March and April 2020 when masks were still a rarity, but we decided to put Stefan in a mask while in Kali’s home.
Kali and Stefan can manage practical tasks like travel and shopping, but when it comes to making bigger decisions about their lives – and dealing with bureaucracy – they need some support. People with learning disabilities are often left behind when health information is provided in writing or digitally. We wanted to show Kali getting help from the NHS, and she dials 111 for advice. I depicted four clear messages from her call handler: reduce contact with others, wash hands, and stay at home – the government’s Covid advice at the time. Added to this was ‘drink fluids’, which wasn’t being advised specifically by the government, but which we were keen to portray. People with learning disabilities often don’t take enough fluids when ill and can suffer from dehydration. We show Kali drinking lemonade as well as water, and later in the story we see her urine colour becoming paler as she rehydrates.
In Summer 2020 we produced ‘Having a Test for Coronavirus’. In this shorter story (featuring some images adapted from ‘Beating the Virus’) Kali receives help from a support worker to take her to a Covid testing centre. Again, there was a need for urgency: at that time there was no vaccine, and testing was an essential tool in monitoring and managing infection. We also produced an alternative version called ‘Having a Home Test for Coronavirus’, showing Kali using a home kit.
Towards the end of 2020 we started a new, longer story: ‘Love in Lockdown’. This one revolves around mental and emotional health, and our human need for one another. By now Kali’s and Stefan’s friendship has become central to both of their emotional lives, but it’s unable to develop in the real world because of lockdown. This is taking a toll – they are missing each other, and are missing their previous relative independence. They’ve had to revert to the support of other people in their lives: for Kali, it’s a professional support worker, and for Stefan, it’s a family member. These two people appreciate the importance of the relationship, and want Kali and Stefan to have an independent and fulfilling emotional life. They find ways for them to be together, first online and then safely in person.
Later in the story, we see Kali and Stefan obtaining their vaccinations. The vaccination part of the story was completed first and was published online in February 2021, not long after the real vaccine programme had started. Beyond Words were keen to portray the process of getting the vaccination, giving people with learning disabilities and their supporters a visual resource to work with, helping to allay anxieties for some.
There are always challenges with illustration projects: not least editing and distilling content into a few key pictures. But Covid (as in the real world) brought additional challenges. One technical challenge was to socially distance the characters in the drawings: introducing appropriate space into the compositions while keeping sufficient detail. Another was to show expression and emotional content in faces when the characters are wearing masks and their mouths are invisible.
For me as the illustrator it was a great pleasure to work on the characters of Kali and Stefan over this series of stories, really getting to know them and having their best interests at heart. Now they’ve had their vaccinations, it looks like – finally, and with lots of patience – their relationship is able to develop. It’s for readers to determine where it goes from here. I am very fond of them, and I wish them all good luck!