Learning Disabilities & Autism Opinion

Leading research through lived experience

Heart n Soul at The Hub co-researchers in the filming studio (c) Heart n Soul
Pino Frumiento speaking at the launch of Heart n Soul at The Hub at Wellcome Collection (Wellcome Images)

by Pino Frumiento MBE, co-founder of Heart n Soul

What is Heart n Soul at The Hub? It’s a project that flips the microscope – that’s what it is.

People with learning disabilities and autistic people have been under the microscope for years, for too long. It’s time we were heard and seen. We want to be trusted and we want to be properly involved in conversations that matter to us.

Our project is all about people with learning disabilities taking control. It makes me feel great to be leading our research. It’s great to be in a building like Wellcome Collection. It’s showing people that we can really do research.

We have decided to try new things on our project, but what we really want to do is have conversations. And people are starting to listen to us.

I, and other co-researchers with learning disabilities, work together with lots of people – some of them are in health care and social care, some are designers or artists, and some of them work in universities.

One of our projects is called Third Space. The ‘Third Space’ is where we sit down and spend time with doctors and nurses and carers. We know they are so busy. I wouldn’t have expected them to do this with us, but they are doing it! It’s all about us spending time with each other as human beings, not as patients and carers. It’s good that they’re doing this. It’s just the start, but they’re connecting with us and we hope this can grow in the future.

We know some of us need care and support. But we want to work together and move forward together, so that even if we need care, we can also be free and be in control of our lives.

I also want bigger changes for people like me. I want to feel like we are connected with society. Not for people to always turn away from us.

At the beginning of this project we heard about some research. It said that most people feel good towards learning disabled people. But when we talked about this with each other we knew that this doesn’t feel true in our lives. So, we are having the biggest conversation we’ve ever had. We have filmed ourselves asking questions that are important to us and the public are answering us.

The Hub space at Wellcome Collection (Wellcome Images)

We want to find out what people really think about people with learning disabilities, but we also want to share what we think and how we feel so that people understand more about us and our lives. If we can understand each other more then maybe we will be able to change things for the better. I can’t wait to see what comes out of it.

 

 

You can answer Pino’s questions at www.heartnsoulasks.com

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. You can find out more about Heart n Soul at The Hub and join their mailing list at www.heartnsouleye.com.

 

 

 

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