Inclusive Research Past Present - and Future?

Jan WalmsleyVisiting Professor, Open University

UK

Aims

Define Inclusive Research

Past – How and why it started

What it has achieved and what is left to do

Future directions?

Questions

• What is inclusive research?• When did it start and why?• Why do inclusive research?• What has it achieved?• What is left to do?• How might it develop?

Inclusive Research

From the objects of study to the people who frame the questions

Defined as:A term which embraces participatory and

emancipatory approaches to researchWalmsley and Johnson 2003

Inclusive Research

• Owned (but not always started) by people with learning disabilities

• Furthers the interests of disabled people, researchers on the side of people with learning disabilities

• Collaborative, working together• People with learning disabilities exercise control

over process and outcomes• Outputs are accessible• Walmsley and Johnson (2003) op. cit.

Carlisle Research Collaborative Definition

• Person led research is research started and controlled by people who have learning difficulties

• Rejected research is where people with learning difficulties are not part of the research when it is about them... Where they are not completely included they are rejected

• Townson et al 2004 page 73

Why ?

• Getting a voice – life stories, distinctive experiences, identity

• New roles, new skills, new knowledge • Change the image of people with learning disabilities• Try out new ways for staff and professionals to work as

partners with people with learning disabilities• Make services work better – personalisation• Reduce barriers in society - understand what they are,

how to change them• Better information – finding the right words

Traditional / Inclusive Research

Traditional• Researchers decide on the

questions to ask, and the methods

• People with learning disabilities as objects of research

• Research not designed to be used by people with learning disabilities

• Reports not accessible

Inclusive• People with learning

disabilities help decide topic, questions, methods

• People with learning disabilities carry out some research tasks

• People with learning disabilities use the results

• Accessible reports

From Academic Gaze to Speaking for yourself

Edgerton, Cloak of Competence 1967Atkinson and Williams, Know Me As I Am 1990

From thisClass at Leavesden Hospital, Hertfordshire,England. 1960s

To thisGrundtvig Partnership Work Group in Iceland c. 2007

Inclusive ResearchWhere it came from • Self advocacy – finding a

voice• Participatory Action Research

• Normalisation / srv – valued social roles

• Social model of disability -reducing barriers

• Co – production - changing professional practice

Self Advocacy: Finding a Voice

What is the problem? People are known by their label, not as human beings with their own story to tell

Why inclusive research? Working alongside researchers people tell their stories and let others know who they are, what they want

What do we expect to happen? A more positive view of people with learning disabilities, greater confidence

What is success? Looking beyond the label to see the unique human being

Mabel Cooper Life Story

Stories of Cherry Orchard, Heavers Farm, and Waylands

•

Participatory Action ResearchWhat is the problem? People know best what they need, but

need help and resources to work out how to get it

Why inclusive research? Researchers support people to decide what matters to them, and find solutions

What do we expect to happen? Practical solutions.People have more skills so they can take charge of their lives

What is Success? People are better able to sort things for themselves in the future

Annual Health Checks in Oxfordshire

• Sponsored by NHS Trust and self advocacy group (My Life My Choice)

• In Oxfordshire only 26.1% of people had a health check in 2009/10.

• Carried out by MLMC and me• Easy Report, full Report and Launch• MLMC campaign to increase health checks (in

2012 50%)

Money, friends and making ends meet

• Finding out how people manage when they don’t have support from services

• Relying on friends• Managing our money

• Money friends and making ends meet research group (2012) Having Friends: they help you when you are stuck BJLD Vol. 40 No 2 pages 128-133

Social Role ValorisationWhat is the problem? Labelling people leads to them being

viewed as unable to do things

Why inclusive research? Doing research gives people new roles and skills

What do we expect to happen? People will be seen as able to do important things like research, and they will inspire others

What is success? Image of people with learning disabilities changes

Central England People First research own history

• Philip visits Northamptonshire Archives

Young people at Changing Our Lives interview staff and residents of former hospital

The Social Model of DisabilityWhat is the problem? People are disabled by barriers in society

Why do inclusive research? If disabled people are in charge of research, then they can research how to get rid of these barriers

What do we expect to happen? We find solutions which reduce barriers to disabled people finding jobs, getting better health care, education etc.

What is success? Disabled people are included, they get jobs, they get better health care, education etc.

Self Advocacy Where Next?

• Central England People First commissioned Ian Davies (former chair) and me to find out how other self advocacy groups work and report back

• Used results to change the way they work

Clare Inclusive Research Group, IrelandWe have a right to relationships: Using Drama to get the message across

Clare Inclusive Research GroupResearch into the barriers to travel in rural Ireland, using drama to present findings

Co-productionWhat is the problem? Professionals think they know best and

don’t ask people what they want

Why inclusive research? Partnerships between professionals and disabled people to find out how to make services work better

What do we expect to happen? Professionals learn to work in partnership, services really do meet people’s needs

What is success? People get services which work well for them, they might even be cheaper

Framing the research questions

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_4120033

Finding the right words

The terms people use to discuss research is shaped bypast experience. This in turn shapes the role they feelthey can take in research. In our research project onadult protection policy we found the terms risk andabuse in particular are shaped by past experience.

Extracts from accessible summary p. 143

We have found that by NOT asking people their storybut sharing one of our own meant people that came toour research sessions felt able to share what theywanted about their story, in the way they wanted towithout feeling put on the spot..

Brookes I, Archibald S, McInnes K, Cross B Finding the words to work together: developing a research design to explore risk and adult protection in co-produced research BJLD 40 (2) 143-151

Including people with higher support needs

Sue Ledger combined interviews with information from those in the person’s network and ‘mobile interviews’ to enable people with higher support needs and challenging behaviour to contribute to Life Maps like these

The research helps explain why some people did not get placed out of borough. It can be used to reduce out of borough placements and to develop personalised services with people who have high support needs

What is left to do

• Only a few people get the chance to do research• People with higher support needs often left out• We rely too much on ‘easy read’ • We have not told the world about its ’added value’ • People with learning disabilities need knowledge and

skills, as well as life experience to do research• Research might change, but does life really get better?

What of the Future?

• Build on successes – BJLD, JARID, right language, nature of support relationships

• Sharing leadership, team approach, organisational relationships

• Transfer what we have learnt to practice• Help people to ask questions for others to research• Acknowledge that staff, families, professionals and

researchers have contributions to make to understanding the past and forging a better future

A different way to think about inclusive research?

What is the problem Bridge the gap between what people want to be doing, and what they are rejected from doing by the way things are

Why inclusive research? A chance to try out doing things differently

What do we expect to happen? Transfer what we learn through research into practice, better services, better lives

Success ? People get to do what they want to be doing