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Disability co-research survey asks the public about the value of difference
The first in a series of video surveys asking the public for honest answers about their attitudes to autism and learning disability launches today (December 3) - marked around the world as International Day of Persons with Disabilities. The exploratory research from Wellcome’s current Hub residency, Heart n Soul at The Hub has been developed by a group of learning disabled and autistic co-researchers working alongside academics and designers from UAL Creative Computing Institute.
Together they have built the accessible survey platform Heart n Soul Asks, where the co-researchers ask questions based on their real-life experiences directly on-screen. People can answer by typing text, uploading an image or recording or filming a response.
Pino Frumiento, Heart n Soul co-founder and researcher
The most important thing I want to see change is how people with learning disabilities are treated, that’s really number one. But for that to happen, we need to understand what people really think and feel about learning disability. We want to open up a conversation with people.
The co-researchers are not afraid to ask big, bold and personal questions. The group understands that many people might find them difficult to answer, but part of their experiment is to see if they can generate an honest conversation and potentially shed new light on what we already know from existing research about public attitudes towards learning disability.
Lizzie Emeh, Heart n Soul co-researcher and artist:
We want you to have a thinking experience and allow yourself to enter a different mindset. Most of all we want you to be honest.
The team from UAL Creative Computing Institute are Principal Investigator Professor Mick Grierson, Wellcome Hub Postdoctoral Research Fellow, data scientist Dorota Chapko, Research Assistant and UX researcher and designer Nalini Edwards, and computer programmer Will Gallia. Heart n Soul’s co-researchers include co-founder of Heart n Soul Pino Frumiento, and Heart n Soul artists Robyn Steward and Lizzie Emeh.
The project involves the use of machine learning, data science and AI to capture and cluster insight-rich response data in real time and provide meaningful analysis of people’s interaction with the survey questions.
From a research perspective, the project will seek to demonstrate that these types of engagement can lead to significant changes in culture and attitude, providing evidence around the added value of “inclusive research”. The group anticipates that the technology that they have developed together could be valuable for other people interested in conducting research, running multimedia surveys and analysing results using machine learning systems.
Professor Mick Grierson, UAL Creative Computing Institute:
The most exciting part of this project is the opportunity to work closely alongside learning disabled people to design technology that can help us all work together and understand each other better. When we do research together in this way, in collaboration with people whose views are often discounted and ignored, the process can be genuinely transformative. It creates something that makes things better for all of us.
Heart n Soul are the third residents of The Hub,, Wellcome’s transdisciplinary space exploring health in its cultural and social contexts. Led by autistic people and people with learning disabilities, Heart n Soul at The Hub are exploring ideas like human value, ‘normality’ and the value of difference between us all. The two year project brings together people with and without learning disabilities who have different skills and experience, like research, art, design, technology and health, to discover new and exciting ways of working and collaborating. The project is driven by a passion to create a positive change in society for people with learning disabilities and autistic people. Heart n Soul at The Hub’s hope is that their research will be a step towards understanding how this change can happen.
Watch and answer the questions by visiting the Heart n Soul Asks platform: www.heartnsoulasks.com
Image: The Heart n Soul co-researchers, courtesy of Heart n Soul.
Trailer - Heart n Soul Asks
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