CHI2020 Heart n Soul Research Paper

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Easy Read “We have been magnified for years - Now you are under the microscope!"

An Easy Read summary of Heart n Soul’s CHI2020 conference paper

What does the title mean? The title of our conference paper: “We have been magnified for years - Now you are under the microscope!” has an important meaning to us.

If you say that something is under the microscope, you mean that it’s being studied very closely, usually because it is believed that something is wrong with it.

Normally researchers do research about learning disabled and autistic people’s lives. But the researchers themselves are not learning disabled or autistic people.

We are learning disabled and autistic researchers. We want to ask everyone else the questions and put their answers “under the microscope” for a change.


Summary Heart n Soul are an arts organisation who support the creative talents of learning disabled and autistic people.

We have been working on a research project called Heart n Soul at The Hub with Wellcome Collection.


We published a paper about some of our research at the Computer Human Interaction conference 2020 (CHI2020)

This is an easy read to tell you about what was said in the conference paper.


Introduction Heart n Soul are an arts organisation who believes in the power and talents of learning disabled and autistic people.

In 2018 we started a research project called Heart n Soul at The Hub at Wellcome Collection.

For this project we worked with researchers, artists, clinicians, computer scientists and designers to do research.

Our research is trying to discover new and exciting ways of working together.

We want our research to challenge people’s attitudes towards learning disabled and autistic people. We want to lead research and be listened to.


What we wanted to do We found that in academic writing attitudes towards learning disabled and autistic people are generally positive and inclusive.

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.

As a team of diverse people we wanted to know why this was happening.

To try and find out more about how people really feel about learning disability and autism we created a new kind of online survey.

We felt a survey would be a good way to ask questions. But only if we could we make it accessible and ask our own questions directly to the public.


Co-designing Our Survey App An app is a small computer programme. Our survey app was co-designed by 6 people.

Co-design means people with different backgrounds and experiences working together to design something.

We wanted to co-design our survey app because we wanted it to be accessible to lots of different people.

At the co-design workshops we explored both the good and the bad parts of doing surveys.

We also made test surveys called ‘prototypes’ to try out different ways of making our survey.


We did 2 tests with our prototype survey app to learn how to make it better.

For these tests we invited 10 people with and without learning disabilities and autism to try out our test survey.

They told us: ü How easy our survey was to understand ü If it was accessible to them ü If they found it easy to use

Using this feedback we then created our real survey app.

Our survey app let us ask questions in creative ways using pictures, writing, sound and video. You can answer questions in those ways too.

It also allows you to: ü Change the colour of the background. ü Make text bigger or smaller. ü Listen to words and read aloud.


Designing the Survey Questions We then thought of questions to ask the public in our survey.

Pino is a co-founder of Heart n Soul and has a learning disability. He organised the first workshop to design the survey questions.

Tea Party!

We later called these workshops ‘Tea Parties’.

Pino invited 13 of his friends and colleagues to help us think of survey questions.

During the Tea Party we came up with 3 ideas which helped us think of our questions: ü How people understand things ü Pride - being proud of your disability or of Heart n Soul ü A conversation with the public


But we wanted to make sure that everyone in the team understood what research is about.

Tea Party!

To do this we organised another ‘Tea Party’ which looked at ‘What is Research?’.

8 co-researchers who enjoyed coming to our Tea Parties the most worked on the survey questions in detail. They were: Pino, Robyn, Lizzie, Mark S, Ifeoma, David, Michaela, Donald.

We created a story board of questions. Co-researchers had to decide: ü How many questions to ask. ü How they would ask them (video, sound or in writing). ü What order to ask the questions in.

Co-researchers decided to ask most of the questions using video. This felt a more human way of asking questions in surveys.


Our Survey Questions Some questions from our survey:

o People stare at me all the time. What do you see when you see me?

o Are you frightened of people with learning disabilities?

o 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?

You can watch a video of our questions:

Click here! Or type this link into your browser:


What We Learnt More than 1,500 people have done our survey.

We studied the survey answers so we could learn from them.

We learnt it is better to work together with learning disabled and autistic people from the very start. We should be included in: ü Application writing ü Thinking of research questions ü Data collection

We also learnt that there are different ways of expressing ourselves. Researchers should use lots of different ways to do research like drawing, plasticine and music.

Trust and relationships are important. We learnt that being kind to one another and creating a caring team was key to the success of our project.


Questions We Still Have Even though we have finished our survey, we still have questions on our mind.

How can we make being a researcher more accessible to more people?

Bringing your ‘whole self’ to research can be emotional for people. How can this happen safely?

How can we include everyone in making sense of research information? There can be a lot of information and the usual ways of knowing what it means aren’t inclusive enough.


The Researchers Dorota Chapko Nalini Edwards Lizzie Emeh Donald Kennedy David McNicholas Michaela Overton Pino Frumiento Mark Snead Robyn Steward Jenny Sutton Evie Jeffreys Catherine Long Jess Croll-Knight

Ben Connors Sam Castell-Ward Ifeoma Orjiekwe David Coke Bethany McPeake William Renel Chris McGinley Anna Remington Dora Whittuck John Kieffer Sarah Ewans Mark Williams Mick Grierson

Funders Heart n Soul at The Hub was funded by Wellcome. This means they paid for the project to happen. We worked on our surveys with our partner the Creative Computing Institute, University of the Arts London.


Jargon Buster This part of the easy read helps to explain some of the words used:

Accessible If something is accessible it means it is easily used by lots of different people.

Academic Academic is used to describe things or people that relate to schools, colleges or universities.

Attitudes Attitude means the way you think or feel about something. For example, “Her attitude towards work is very good.�


App An app is a small computer programme.

Co-design Co-design means people with different backgrounds and experiences working together to design something.

Clinician A clinician is a health care professional who works directly with patients.

Data Data is another word for information collected during research.


Prototype A prototype is a model of a product to test to see if it works.

Research Research is careful study and investigation to discover or explain new things.

Survey A survey is a set of questions you ask a large group of people to find out about their opinions.

Tea Party This is what we called our research workshops.


Find Out More You can find out more at: Even though our project has come to an end you can still get in touch with Heart n Soul if you have a question or would like to know more.

Phone and email Address Heart n Soul Albany Centre Douglas Way Deptford, London SE8 4AG

020 8694 1632

This easy read booklet was created by Jade French Co 2020


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