Learning Disabilities & Autism Opinion

Creating a new space where relationships and people come first

John Kieffer, cultural policy advisor and team member of Heart n Soul at The Hub

Back in February, Pino Frumiento MBE, co-founder of creative arts charity Heart n Soul, wrote in Care Talk about how he and others are leading our project through lived experience. Heart n Soul at The Hub is a collaborative research project based at and funded by Wellcome that is led by people with and without learning disabilities and autistic people. A strand of our project, ‘Third Space’, specifically addresses relationships between people with and without learning disabilities in the context of health and care.

Third Space was the result of a series of conversations between people with and without learning disabilities that highlighted the lack of real opportunities for health and social care professionals and their ‘clients’ to relate to each other as people. The time allowed for talking was often too short, relationships were often short term and could be changed at short notice, and physical spaces unfriendly or inaccessible. All of these factors make it difficult to establish meaningful rapport, risking misunderstandings or unhappiness and often make everyday interactions unsatisfactory and frustrating. Professionals can be left feeling that they cannot do their jobs properly, and people with learning disabilities and autistic people can be left frustrated that they are not being listened to.

We were keen to see what might happen if we could create a space where health and care professionals and people with learning disabilities and autistic people could come together in a group as people first and leave their usual roles to one side. We wanted to see what would happen if people were allowed to be themselves, at their own pace and in their own terms.  A ‘third space’.

We were delighted when the Learning Disability Team of Camden Social Services agreed to collaborate with us on the project, interested as they are in the whole area of co-production.

It was no surprise that Heart n Soul, being first and foremost a creative arts charity, decided on using creativity as an equaliser to bring the 14-16 people in the group together. We started with three initial creative sessions, led by people with and without learning disabilities. At the first session, with minimal introductions, we jumped straight into a voice workshop and within a short period of time the room was full of people playing with sounds – grunts, growls, barking – and introducing themselves to each other in a fun way. For the second session, Pino asked everyone to bring songs, objects, pictures or just memories of ‘magic moments’ from their recent or distant past. These formed the basis of a collage on the wall, great conversation and a hastily compiled Spotify playlist. In our third session, artist Bobby Baker, who often uses food as the material for her work, invited the group to decorate a cake that reflected themselves and their own self-care in some way.

We are now in the process of re-connecting as a group remotely, thinking about our next steps and sharing our learnings with a wider audience. Our early conversations about people’s experiences of the Covid-19 pandemic have emphasised how important meaningful relationships are to survival and hope in the most challenging times.

We would love to hear about examples of other projects where professionals and people who would ordinarily make up a ‘client’ group are coming together to explore carer / ‘client’ relationships. You can contact us at heartnsoul@wellcome.org.

In the meantime, we are pleased to invite you to an online screening of our short film ‘Who Cares?’, an early product of the Third Space project. The film attends to relationships between support workers and learning disabled and autistic people from Heart n Soul. Join us there on Sunday 18 October 2020 at the Bloomsbury Festival.

Heart n Soul at The Hub is a research project led by people with learning disabilities and autistic people from award-winning creative arts charity Heart n Soul. The project is based in The Hub at Wellcome Collection, a space for collaborative research, and funded by Wellcome. You can find out more about Heart n Soul at The Hub and contact them through their website at www.heartnsouleye.com.

 

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