On the eve of the launch of the Heart and Soul at the Hub website on 5th March, Kate Lovell attended a digital sharing event to learn about the kind of future Heart n Soul artists have envisioned over two years of work as Wellcome Collection’s artists-in-residence.
The artwork made through the residency program and its messages, creating a world redesigned by learning disabled and autistic people, is particularly significant in the context of Covid-19, heightening social injustices and compounding institutionalism. Artists from Heart n Soul have been experimenting, researching and co-creating artworks that offer a different way of constructing our world.
The team began with an access audit of The Hub’s space and an overhaul to make it a truly inclusive working environment. A human research survey, called Heart n Soul Asks, has been built online. Learning disabled and autistic adults ask research questions using video to make the experience of taking a survey more personal and, crucially, a “shift in power – this community asking their own questions”.
Heart and Soul artists worked with professional researchers from the University of the Arts to create research methods that are accessible, asking questions from the perspective of learning disabled and autistic adults. Key to Heart n Soul Asks is what the artists neatly term: “flipping the microscope”. For far too long, learning disabled and autistic people have been under the scrutiny of the medical profession and society at large; studied like specimens. This research project has given over the power, turning the tables so that learning disabled and autistic people can ask questions of non-disabled people for once.
Co-founder of Heart n Soul, Pino Frumiento, wrote an article published in the Guardian based on his research question: ‘Are you scared of learning-disabled people?’ His article highlights how rare it is to read an opinion piece from a learning-disabled person, and in a national newspaper virtually unheard of. He talks about his anger at the scandal of Whorlton Hall Hospital, exposed in a BBC Panorama documentary in 2019, where learning-disabled adults were subjected to indescribable abuse by staff.
After Winterbourne View and Whorlton Hall we desperately needed, and still do need, a deep look at society and its treatment and institutionalisation of learning-disabled people. The general public perhaps consider locking learning-disabled people away an aberration of a bygone era, but the truth is institutionalisation is alive and kicking. Covid has compounded the already significant issues in so-called ‘care’ homes for learning-disabled adults.
A Guardian article published in December 2020 spotlighted the appalling story of Jack Cavanagh, a 17-year old living in residential care, whose parents were unable to visit him for 15 weeks during lockdown due to the law’s opacity on visitation rights in care home settings. He was segregated in a small area, given no affection and began to self-harm. Jack’s parents had to take advice from a solicitor before being able to arrange restricted visitation, overseen by staff.
Institutions are already secret bastions which hide away those we would rather not have to ‘deal’ with – not a comment on those who find themselves unable to care for their loved ones, rather an indictment of a society that is not constructed to include autistic and learning-disabled people. Even the terminology is shudderingly medical model, with phrases like “complex needs” still abounding – complex according to who? What human being, in all their totality and depth, has needs that are not complex? Ironically, the only people I can think of whose needs are binary are those lining the benches in parliament, whose worlds are propped up by the blunt instruments of greed and power.
Covid-19 has disproportionately affected learning-disabled people, and Radio Two DJ Jo Whiley brought this issue into the public eye when she spoke out about her sister, Frances, who contracted the virus in the residential care setting in which she lives. Whiley has called for the vaccine rollout to prioritise learning-disabled adults after she was offered a vaccine before her sister. A Public Health England study revealed that learning-disabled adults are up to six times more likely to die of Covid-19 than the general population.
Whiley’s personal connection to the learning-disabled community meant she was motivated to use her profile for good, to highlight the stark inequalities. But it shouldn’t take a non-disabled celebrity speaking out for the ferocious disparity in quality of life for learning-disabled and autistic adults to be discussed.
Attending the presentation of A Different Kind of Future felt like being present at the launch of a long-overdue revolution: learning-disabled people carrying out research, making art representing their findings and presenting it to the public. A common theme of the evening, from comments in the lively You Tube chat box and from the presenters themselves, was that Heart n Soul need to run the country, with many commenting that if Heart n Soul artists were in power, they would feel safe. The work that Heart n Soul have done during their residency at the Hub absolutely needs further amplification.
“A World That Is, A World That Isn’t”, is a series of art works illustrating the inaccessible aspects of current society, such as people speaking fast, baffling road signs, and offers ideas for how the world could be made more open and user-friendly, including an art work illustrating fair taxation.
Artists Robyn, Rajah, Aysen, Thomas and Castro, with artist Rob Young, have created a newspaper titled Inclusive Futures which, in their own words, “had no agenda, other than everyone being included. It says “‘This is our experience’, and that’s it”. The artwork which leaves you longing for an in-person encounter is the Hopes and Dreams Tree, a beautiful, sensory event with five jars to explore, each filled with the hopes and dreams of a Heart n Soul artist. It is a light and sound installation, which can be accessed digitally through the Hub website, but begs to be experienced in real life.
Heart n Soul’s residency at the Wellcome Collection may have come to an end, but the conversations they have opened up must continue, the art that has been produced lives on, and the fantastic evening of creativity curated by the artists in residence is exactly the kind of representation of learning disabled people we need to be seen by as many people as possible. Visit the Hub’s website, share it on socials, and most important of all, send it to your MP to show them the competition.
As a result of their work in The Hub, Heart n Soul have gone on to receive funding from The Health Foundation to work with an NHS Trust and London Borough on radically redesigning health services for people with learning disabilities and autism.