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

ESRC funded seminar series

Notes on Seminar 1: Scoping the boundaries of participatory research, Plymouth University, January 10th 2013

Introduction
Speakers Jane Seale, School of Education, Plymouth University Jan Walmsley, Visiting Chair, Open University Title Introduction and Overview of whole seminar series Inclusive research past and present Photo

Carlisle People First research team with Rohhss Chapman, Manchester University

Researching Together: pooling ideas, strengths and experiences

Dorothy Atkinson, Emeritus Professor, The Open University

Practical and emotional issues in co-researching.

Gordon Grant, Sheffield Hallam University

Participatory research some thoughts on working together

Slides from each of the presentations given on this day can be downloaded from our project blog at: http://participat.blogspot.co.uk/2013/03/seminar-1-scoping-boundaries-of.html

There were four (4) questions we were thinking about in this first seminar:

1. What has been achieved so far with participatory research methods? 2. Where are the tensions and challenges and can they be addressed? 3. Are people with learning disabilities boxed in with regards to the kinds of participatory research they are expected or supported to undertake? 4. Are there limits to the participation of people with learning disabilities in research? Who or what influences these limits? Can and should the boundaries of these limitations be pushed?

What has been achieved so far with participatory research methods?

We have some definitions- for example Carlisle People First write about how they define personled research. Although the many different terms used (inclusive research, participatory research, person-led research) may cause confusion.

A history of the development of inclusive or participatory methods can be traced. For example Jan Walmsley talked about inclusive research came out of selfadvocacy, participatory action research, normalisation and social role

valorisation, the social model of disability and co-production.

There are many examples of research involving people with learning disabilities for example the life story work done by Dorothy Atkinson and Mabel Coober and the autobiographies and history work done by the members of the Carlisle People First Research Team.

Tensions that we identified and discussed included:

Gordon Grant got us to think about two important questions: 1) whether it is easier to talk about and judge the process of inclusive research rather than the outcomes 2) Is that the benefit that an inclusive research team gets in working together a valid outcome?

Janet Bardsley asked the question: Is there a conflict between researchers who want to understand things and people with learning disabilities who want to change things.

The Carlisle People First Research Team shared how sometimes other people question the status of their research. Also, the politics of research that is done by people with learning disabilities being associated with "complaining about services" can stop people agreeing to help.

Jan Walmsley suggested that there are lots of reasons to do inclusive or participatory research but we often mix these up. Our reasons to do inclusive research are influenced by answers to the following questions: what is the problem? What do we expect to happen? What is success?

Dorothy Atkinson shared how doing life story work, an example of inclusive or participatory research can bring out strong feelings and emotions because of the long time spent building a close research relationship and also sometimes the nature of the stories and the content of what is being talked about. This can cause tensions which because such closeness could: 3

o lead to the potential to exploit o promote dependency o raise expectations of friendship o leave people feeling rejected as the research ends.

Challenges that we identified and discussed included:

Gordon Grant asked whether inclusive research teams were supporting overlooked groups and making use of the different personal experiences they could bring to the research. Similarly, Jan Walmsley asked can we move away from words if we are to include people with high support needs in inclusive or participatory research?

Jan Walmsley asked the question- research might change but does life really get better for people with learning disabilties?. Some seminar participants responded by saying that life is getting worse for people with learning disability at the moment.

Nicola Grove argued that we are in danger of inclusive research being seen as just "special learning disability" research.

Nicola Grove also asked the question: " How do you get from individual stories to changing politics and policies.

The Carlisle People First Group identified decreasing funding as a challenge as well as difficulties in accessing the academic world. 4

Anne Collis argued that people with learning disabilities need to find ways of creatively involving academics in research, in other words we should not just talk about how to involve people with learning disabilities in participatory research.

Does inclusive or participatory research have to jump more ethical hurdles than other "academic" research?

Are people with learning disabilities boxed in with regards to the kinds of participatory research they are expected or supported to undertake?

It is possible that research done by people with learning disabilities is perceived as being just about "complaining about services".

Are there limits to the participation of people with learning disabilities in research? Who or what influences these limits? Can and should the boundaries of these limitations be pushed?

Melanie Nind suggested that one issue that tends to be ignored is the challenge of involving people in participatory research who are not part of organised groups (e.g. advocacy groups). These people are less visible.

Jan Walmsley argued that people with learning disabilities need knowledge and skills as well as life experience to do research.

We also talked about what makes good participatory or inclusive research

Anne Collis argued that doing inclusive

research is good research, not just good for people with learning disabilities. Linked to this Jan Walmsley said that we have not told the world about the added value of participatory or inclusive research

Gordon Grant argued that good participatory or inclusive research involves: o using and explaining knowledge contributions from service users and academic researchers o testing each others' knowledge contributions o changing things ( services, policies, personal, ideas, research capacity) o Rigour and clarity in data analysis- making it clear how it is done rather than just "we did this together".

The Carlise People First Research Team shared the guidelines they use in their work: o Our projects should always benefit people with learning difficulties. o We have ownership of our own projects. o We are all equal as researchers in the team. o People with learning difficulties are to be employed on our research projects and earn a salary o We will always review our projects and look at good and bad points. We learn from our mistakes o We will publish our work and get it out there. This is the only way things will change!

Jane Seale, Melanie Nind, Liz Tilley & Rohhss Chapman, Jan 2013 6