Autistic and learning disabled co-researchers from Heart n Soul at the Hub at Wellcome Trust have been working alongside our academics and designers from UAL Creative Computing Institute (CCI) co-designing new ways to do research. The second public survey from this ground-breaking project to challenge what we know about learning disability is now open, and it explores what we have in common.
Specifically, the Heart n Soul co-researchers want to know if we share some of their experiences of overprotection, dependency and exclusion, and we are asking everyone to take part so that we can build our understanding of these important themes.
Not your usual survey, the survey platform called ‘Heart n Soul Asks’ was built to be accessible and interactive, with different ways for people to take part.
The co-researchers talk to you about their own lives and ask questions about yours through a series of videos, which makes the experience more like having a conversation than filling out a survey.
You can respond with text, upload a video, record an audio message or upload a picture.
Lizzie Emeh, Heart n Soul co-researcher and artist:
We want to understand you. We’re asking you: What do you think about this? What do you think about that? It’s an ice breaker. Basically, it’s having a conversation.”
Our first research paper
An important topic for the Heart n Soul co-researchers is the lack of connection they feel they have with the rest of society. Existing research that explores public attitudes towards learning disability shows the majority of people having positive attitudes - but doesn’t help to explain why the co-researchers feel so alienated and disconnected from non-disabled people.
The project's first research paper led by Dorota Chapko, postdoctoral research fellow and Professor Mick Grierson, Research Leader at UAL Creative Computing Institute documents the inclusive research process and the need for accurate insight about the experiences of learning disabled and autistic people in society.
Dorota Chapko, Wellcome postdoctoral research fellow, UAL Creative Computing Institute:
We believe that the perspective of those with a lived experience of learning disability can impact significantly on how scientific data about public understanding of learning disabilities is collected, evaluated and understood.
Responses and analysis
The first survey from this project launched on International Day of Disabled Persons in December 2019 and asked the public about their attitudes to learning disabled people. It was marked by an opinion piece by Heart n Soul co-founder and co-researcher Pino Frumiento MBE, published in The Guardian.
Over 1000 people have taken part to date and the first survey remains open so that we can continue to build on the learning and insight. Responses are being processed using AI and machine learning systems, to enable rich analysis of mass multimedia data.
We are beginning to co-analyse the findings together with the co-researchers, which will be breaking new ground in inclusive research if done effectively.
Sharing our approach to inclusive and accessible co-design
Spotlighting our inclusive and accessible approach to co-design, the research paper was accepted to CHI (Computer Human Interaction) 2020, one of the world’s leading conferences in the field of computer science, due to take place in April.
The event is not going ahead due to the global pandemic, but the paper is available Open Access on the ACM Digital Library:
- Chapko, Dorota and Grierson, Mick (2020): "We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.
The project features in the recently launched Creative Computing Institute and Institute of Coding course on Futurelearn: Introduction to UX and accessible design, led by Professor Mick Grierson; and you can read more about the concepts on Wellcome’s Reimagine Research campaign pages.
Go straight to the Heart n Soul Asks platform to take the current survey.