| Literature DB >> 34566467 |
Lilly Cook1, Pedro Rothstein, Lizzie Emeh1, Pino Frumiento1, Donald Kennedy1, David McNicholas1, Ifeoma Orjiekwe1, Michaela Overton1, Mark Snead1, Robyn Steward1, Jenny M Sutton1, Melissa Bradshaw1, Evie Jeffreys1, Sue Charteris1, Sarah Ewans1, Mark Williams1, Mick Grierson, Dorota Chapko.
Abstract
BACKGROUND: As part of 'The Hub' project at Wellcome Collection, a team of eight co-researchers with learning disabilities alongside academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid Covid-19 lockdown challenges. Here, we explore our unexpected 'transition' journey from the physical 'Hub' to the digital space.Entities:
Keywords: digital inclusion; inclusive research; learning (intellectual) disability; participatory research; research design
Year: 2021 PMID: 34566467 PMCID: PMC7611723 DOI: 10.1111/bld.12408
Source DB: PubMed Journal: Br J Learn Disabil ISSN: 1354-4187
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| Heart n Soul are an arts organisation who support the creative talents of people with learning disabilities and autistic people. |
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| We have been working on a research project called Heart n Soul at The Hub at Wellcome Collection. |
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| But because of coronavirus, we all had to stay home to stay safe. |
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| To carry on with our research project we participated in 28 research meetings on Zoom. |
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| Along with a video, this is an easy read to tell you about how we did it and how we felt about it. |
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| Heart n Soul are an arts organisation who believes in the power and talents of people with learning disabilities and autistic people. |
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| In 2018 we started a research project called |
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| At The Hub we worked with researchers, artists, clinicians, computer scientists and designers to do research. |
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| We did a type of research together called ‘inclusive research’. |
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| This means research is done in a way that includes people with learning disabilities. We want to lead research and be listened to. |
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| We found that in academic writing attitudes towards people with learning disabilities are generally positive and inclusive. |
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| But this did not fit with the experiences of everyone on our project. They did not feel like society has mainly positive feelings towards them. |
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| As a team of diverse people we wanted to know why this was happening. |
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| To try and find out more about how people really feel about learning disability and autism we created a new kind of online survey. |
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| We felt a survey would be a good way to ask questions. But only if we could make it accessible and ask our own questions directly to the public in a creative way. |
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| 8 co-researchers who enjoyed coming to The Hub the most worked on the survey questions in detail. They were: |
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| We co-designed our questions and survey together. We wrote a paper about this too! |
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| Some questions from our survey included: People stare at me all the time. What do you see when you see me? |
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Are you frightened of people with learning disabilities? |
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What’s it like to have a learning disability? Some people don’t understand us. Some take the mickey. And I don’t like it. How would you feel if you were in our shoes? |
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| We collected more than 1,500 responses to our first survey! |
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| As we were trying to find out what the responses to our survey meant, a lockdown happened. |
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| But the lockdown did not stop us from co-analysing our survey responses. |
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| We used creative ways like singing, drawing, painting, plasticine, creative writing to co-analyse the information. All remotely at home! |
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| In the next section we will tell you how we did it. We will also tell you how we felt about moving away from The Hub and trying to do co-research remotely from home. |
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| We needed access to computers and the internet. It took some time and team effort to make sure that all of us are comfortable with using Zoom. |
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| Throughout 2020, we organised 28 Zoom meetings involving all co-researchers. |
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| In June, Lilly and Sue conducted a series of Zoom interviews with the team to reflect on our ‘transition’ journey from working at The Hub to online. |
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| Lilly is a multi-media journalist and a trustee for Heart n Soul. Sue is an independent Leadership Coach and Mentor. |
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| Lilly and Sue asked all members of the research team what they thought of and felt about co-research at that time. |
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| Lilly then made a video using these interviews along with videos filmed when we were working at The Hub. |
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| The video is nearly 30 minutes long. You don’t need to watch it all in one go. You can pause it and come back to it. |
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| You can watch the video below: |
| We came up with 9 themes. We found these important in thinking about our transition journey. | |
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| Two things that really kept us going when our research became hard because of the coronavirus was … Our friendships across the team Wanting to ‘change the world’ |
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| We hope our project has shown that people with learning disabilities can transition well to working online when there is trust and mutual respect. |
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| It is also not often that people with learning disabilities have the opportunity to take a detailed look at research results. |
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| We created new ways of looking at the information from our surveys so that everyone could take part in finding out what the results mean. |