Towards Equal and active citizenship: pushing the boundaries of participatory research with people with learning disabilities

What have we learnt?

Jane Seale

Analysis and Feedback– We will talk about the issues raised across the seminar series. Jane

will present the project team’s thoughts. We will then invite you to share your ideas and comments.

Brainstorm – Liz will lead a ‘brainstorm’ session. We would like to create a

resource that helps more people get involved in participatory research. We would like to hear your ideas about what would be most useful, and how we could do it.

Shared problem-solving– You were invited to send ahead 'problems' that were bothering you

in relation to doing participatory research. Mel has selected a few for discussion in small groups. This will help us to work through real challenges together and share our ideas so we can all learn.

Analysis and Feedback

Spaces

Boundaries

A different space

• participatory research inhabits 'different spaces and offers different ways of seeing‘ (Cook,2012)

A shared space

AcademicResearchers

People with Learning Disabilities

Who shares the space?

AcademicResearchers

People with Learning Disabilities

Support Workers ?

Ethics Committees

Funders

A space in which we do things

• We learn• We talk• We do research• We make the space

together– Socially constructed,

shared

Participatory Research as a ‘spatial practice’ (Lefebvre, 1991; Thompson, 2007)

A space in which we push boundaries

A space in which we blur boundaries

An example

Walmsely and Johnson (2003): inclusive research as a term allows for blurred and shifting boundaries between for example, feminist, participatory and emancipatory research and it 'has the advantage of being less cumbersome and more readily explained to people unfamiliar with the nuances of academic debate' (p.10).

A space in which sometimes we agree

What is analysis?Pulling a rabbit out of a hat?

• I am a scientist

• I know the right methods

• Therefore I can find out what this all means

Mostly that is not the way things work….

Hey presto!

A space in which sometimes we disagree

• Accessible research is about making things simple, but analysis is not always about making things simple, it is about understanding all that is complex and messy. (Melanie Nind)

Participatory Data Analysis: The Pushing and Blurring of Boundaries

Pushing boundaries

Observation and Video data

Making videos

So let’s see what these themes mean – how do support workers do these things?

Interview and Focus group data

When we got the audio files from all the focus groups…

Analyse the data

Interviews

• We visited a home for elderly people and a neighbourhood for blind people

• We did the interviews in the people’s homes

• Saw how they lived

• The interviews went well

Standard Methods

Analysis Sheets

Disability Specific Methods

Lot in common, understandeach other betterBe aware of the rights of disabled peoplePeople should not be calledmongolidPeole should be equal

Emotion-Balloon

Thought-Balloon

Improvised Methods

Blurring Boundaries

Everyone is involved in all aspects of analysis

Academics do the first bit of analysis

1. University co-researchers

Wrote word by word what people said

Pointed at 19 important things that people had said

2. We all got together and talked about the 19 important things

University Co-Researcher Supporter

Co-Researcher with intellectual disability

People with learning disabilities do the first bit of analysis

Being friendly

• We looked at body language

• People were friendly to each other

• They were able to have a good laugh

• They had good team work

Why is this ‘new’? It’s treating each other like human beings!

Can we cope when some people in our space blur the boundaries?

Participatory research with people with high support needs: The Pushing and Blurring of Boundaries

Pushing boundaries

Visual methods

Multi-sensory methods

Multi-media methods

Story-telling as a method

Blurring boundaries

Changing our thinking about participation

• Debby Watson involved – Parents- to find out as much as possible about child– disabled people from a local advocacy group as co-

researchers- but the research was not about them, it was about children with PMLD

• “the groups session actually wouldn’t have worked well if I hadn’t had the young disabled people from the Listening Partnership with me because they went right off script and just asked the children things that they could answer, like what’s your favourite colour? This put them and their supporters at ease and we went on to get some useful data”

Changing our thinking about what counts as research

Stories as co-constructed

Theories about storytellingwhat do these images suggest?

Stories are what you read to kids: in education this is the dominant idea; almost no oral personal narrative in curriculum

Stories are performances by

one person, everyone listens

quietly.Can lead to “oh dear, I can’t tell

stories”

People tell stories together,

the listener is actively

involved; stories of personal

experience are face to face, animated.

EVERYONE does this all the

time!

This is what we do in

Storysharing

&

Changing our thinking about methods

Participatory research as a boundary object

• As a 'boundary object' participatory research is a collectively generated shared space, which has no fixed boundary 'allowing different groups to work together without consensus". Susan Leigh Star (2010: 602-3)

• In easy speak– As participatory researchers we all want the same thing (object) –

to enable people with learning disability to participate in research– Sometimes we agree and sometimes we disagree on the best way

to make that happen

Participatory research is ‘localised’ and reflective

• Boundary objects reside between groups and are inherently ill-structured, having a vague identity. This vagueness means that groups may not always achieve consensus.

• This does not stop groups from co-operating however. Instead, when necessary, local groups (subsets of the larger groups) tailor the object to their local uses.

• In doing so, they do not necessarily reject the common wider object, rather they 'tack back and forth' between the common object and their more localised object"; between the ill-structured and the well-structured.

• Boundary objects are therefore subject to reflection and local tailoring.

The way we do participatory research is influenced by our local contexts

Here

There