Overview of the collaborative group method of inclusive research - illustrated through work with the History Group and the Self Advocacy and Social Inclusion project Feb 2014

1. Doing the History – A
Collaborative Group Model of
Inclusive Research
Self Advocacy History Group members
.

2. Outline
Ideas behind inclusive research - origins and drivers
Three approaches - pros and cons
Describe the elements of the collaborative group approach used in History project
Some questions to consider”
–should inclusion be criteria for research funding?
– what are the potential drawbacks?
– do we have the necessary conditions?
–how can be create them?

3. Research and Inclusive Research
Not just ‘finding out’ – ‘clear analysis of a problem, specification of goals, careful design,
thoughtful analysis and exposition’ (Abbot & Sapford, 1998)
Contributes to knowledge (O’Leary, 2005)
‘what we should do, what we can do, how to do it, how well done it or enact and learn
from change’
Not value free –philosophical stance about type of knowledge claims possible determines
questions and methods (Creswell , 2007)
Confusion about what constitutes inclusive research – same words different ideas
participatory, inclusive, emancipatory, partnership, collaborative
Ideas about Inclusive Research and its Benefits
•
Traditional research relationships are inequitable
•
People have the right to be consulted and involved in issues that affect their lives
•
Quality of research will be improved (Stalker, 1998)
• Symbolically important to inclusion – Individual and group benefit
• Contested value rather than evidence based – some downsides
3 Main types – Advisory - Controlling - Collaborative group

4. Advisory Inclusive Research
Providing advice to researchers, governments and organisations about research agendas
or how to do it or disseminate it
• Agenda setting - research priorities, funding decisions (Ward, 1998)
• Contributing to research projects – reference groups – advice - involvement in
part or complete projects
−Joint work/advice on aspects of research
Emerson et al., (2005) national survey - advice re inclusion topics, wording
Use of experts by experience
‘because some people don’t have it (learning disability) they forget what it is like for
others’ (Brookes & Davies, 2007, p 129)
Improves research relevance - better quality data more accessible collection methods
Paid employment, valued roles – status - lunches
Representativeness - re research agendas and funding - only particular perspectives
How meaningful is inclusion? Dangers of tokenism form rather than substance
‘we were just being used to rubber stamp the process’ (McLaughin, 2010)

5. Controlling and doing research with researchers
and allies
By and for people with disabilities –People led (Towson et al., 2004) Any less is ‘rejecting’
research
Initiated, led, and controlled by individuals, groups or organisations
Researchers skills at disposal of the group
Questions driven by Social Model perspective - understanding the disabling barriers
Valade (2004) re transport issues facilitated group advocacy
Johnson, (2010) researching a coffee business & bullying
Importance of change at individual and social level –
• Importance of life story work to self identity
• Local change
Scope limited to social model- doesn’t lend itself to all types of research
Questions about capacity to control and undertake alone
Honesty and transparency of role of supporters
‘if pwid need non disabled allies in the research process how can the integrity of
their account be maintained… how can we prevent the non disabled researchers
from assuming a dominant role in the research process’ (Chappell 2000 cited in Williams &
Simons, 2005)
•

6. Story of our work – developing a collaborative
group model Collaborative group
New knowledge for social change
Close to lived experience of participants
Whole project
Proactive – joint initiation
Academic leadership
Shared control
Shared and distinct
purposes – equally
valued
Shared involvement and
distinct contributions –
equally valued
Scaffolding for
Inclusion
Working as a group with
trusting relationships
and dispersed power
Flexible adapted
research methods

7. Shared and Distinctive Purposes - Equal Value
Some shared and some different purposes
History Project – coming together of ideas and perspectives
Self Advocates
Wanting to do their history – pass it on
Expand and sustain self advocacy
Not framed as research – other ways tried previously
Outcomes - reconnect with past members -a book – a conference
Paid work
Academics
Questions about the development of self advocacy in Australia compared to overseas
Ways of making it stronger
Academic imperatives – competitive funding and publication
Recognition and Equal Value accorded to all purposes

8. Shared Involvement and Distinctive
Contributions- Equally Valued
Shared but not the same involvement all stages division of labor and contributions
Dependant on different skills and experiences
‘we have got the experience and knowledge, but we haven’t got the skills what you all have”
Self Advocates
Lived experiences of history of self advocacy
Knowledge and skills from life and working as self advocates
“What skills? We are the history, we don’t need skills, but we didn’t got skills, they’re already
there!”
Networks and memories of self advocacy – dates, details
Academics
Research expertise – knowledge of literature, research design, research practice
Lived experiences of policy development
Networks
Practice skills re scaffolding inclusion

9. Flexible Adapted Research Methods
Recruitment – reunion; photos and memories
‘we tell you who’s good, who will be better, being a better interview and everything’
Interview schedule - preparation and context setting for interviews –
• key moments from very distinct inputs
− academic analysis of documents –time line by self advocate, memories, photos
etc
Group interviews - off the cuff
• Unscripted free flowing, guided conversations
• Academics, listen for meaning, commentary
• Self advocates – scene setting - confirming, expanding, clarifying, challenging,
reflection, commentary/interpretation, correction

10. Interviewing
Amanda: Your face it looks familiar... from somewhere?
[interviewee]: Yes well you, you’d remember me, me from Middle Park days, when I
worked at Middle Park centre at the social club. Amanda: Oh, well that’s turning back the
time a little bit! (laughter) [Interviewee]: About 1981, ‘82, ’83? Amanda: Oh, not [says his
name]? [Interviewee] Yes! (laughter) *PF: Oh, there you go! Amanda: Oh, oh, wow!
[Interviewee] There you go!

11. Analysis and Dissemination
Analysis - experimenting different approaches - multiple stage iterative analysis (Nind, 2011)
• engagement and reflection during data generation
• academic identification of themes for discussion
• academic connection to existing knowledge, further discussion and reflection
Dissemination diverse methods and audiences
• Sydney forum – university community sponsored
• SARU conference – advocacy
• ASID in Melbourne and Adelaide – research
• HAS conference next year – self advocacy
• Rome IASSID – research
• Planned papers –books, events

12. Working as a group - relationships of trust –
shared power
Working together – meet every second Monday; plan what needs to happen; lots of
laughing and hard work; talk a lot about what people said in the interviews; get
paid
Shared control
‘Well, we had different ideas, different points of views, about it, and no matter what, it
all seemed to work, with everyone bringing their ideas to the table, and that, and what
works best, and what’s not work best?
‘Just, well we just tell you, to be quiet, we’re talking’.
Evolution of trust
Strong relationships
Camaraderie
Spill over into personal and professional ‘helping’
Relationships
Commitment - paid and volunteer time from everyone

13. Scaffolding for Inclusion - Accessible Space
Created Accessible space – whenever we are together
Where self advocates –are part of something, understand, make a valued contribution
and there are collegial relationships (Nind & Seale, 2010)
‘Well that’s how you get things done, by working together, on things”.
‘That’s also another good reason why we all meet together, because we bring some
good ideas.

14. Scaffolding for Inclusion - Mediating
Access
Regular meetings - group – or sub groups
Practicalities - Attention to diaries – meeting place, payment, pacing demand
Attention to engagement and group processes
• Interpersonal mediation - facilitation, clarifying, questioning
“PF: That’s right, that was the first one wasn’t it,? DB: Mm, ‘83/’85.*PF: And Janice has been
on that as well? Janice: Mm, I remember the very first one that I was on with Doug, was
up in the old parliament building, up there?”
• Use of Technologies - pictures – language
Patsie talked about the ‘layers’ of work that are happening as part of the research; we said it was like a
layered cake ; Layer 1 the story from start to finish (chronological story)
Layer 2 the organisational story
Layer 3 the personal stories
Shared experiences - conferences, events

15. ‘Non Accessible’ Space
Others talk about needing ‘space to air arguments and debate before translating into accessible
formats’
‘academics need space to develop thinking independent of the pressure of
‘nothing about us without us’ (Walmsley & Johnston, 2003, px )
To prepare accessible space
• reflection on processes, pace and sequence of work, engagement,
competing demands
Doing some of the things PWID find really hard – words, documents, abstract
ideas
– initial analysis/interpretative work with complex inaccessible data sets,
organisational documents, policy, transcripts
Pursue distinct purposes – academic writing

16. Was it worthwhile?
Advantages
‘We couldn’t do it on our own’ – more than the sum of the parts
Better quality research
Insider perspectives
Not imposing frames that are alien - not seeking to re produce people with intellectual
disability in the image of academics – harness their skills and experiences
Trustworthy rigorous research – credibility
Multiple outcomes – accessible and academic knowledge, relationships professional
development
Drawbacks
Requires resources
Scarce academic skills
Representativeness
Few connections between self advocates and academics

17. Should Inclusion be a Criteria for Research Funding
Yes but – be more explicit what is meant by inclusive research
Avoid vague exhortations - priority will be given to projects that demonstrate collaboration
with people with a disability regarding their views and experience (DDT, 2011)
Yes but –only if suited to research questions and purpose
‘not all research lends itself equally to a partnership approach nor will everyone with intellectuaI
disability be able or willing to be involved’ (Ward & Simons , 1998, p 131)
Yes but- only if those involved have relevant experiences - won’t always be people
who are ‘experts’ by experience – need to be sure not just anyone with an intellectual
disability (Bigby & Frawley, 2010, Reinforce and group homes)
Yes but - Who represents the issues for people with more severe intellectual disability
Need to involve others with experience to represent issues relevant to people with
more severe disabilities – and other interests
Yes but - What if people with intellectual disability don’t identify important issues –
things not aware of - McCarthy menopause study

18. Yes but - only if it leads to good research
‘To merely argue that the involvement of service users will naturally improve a research project is as
misguided as believing that only academic researchers can undertake research’ (McLaughlin, 2010 p160)
Yes but - only if its done well – UK LDRI despite being a criteria most did not carry
commitment through
Yes but - only if there is honesty - about roles of supporters, whose in control, how
impact of impairment on engagement with complex texts, words and ideas.

19. Conditions necessary to further inclusive
research
More robust self advocacy movement to take initiative, act as the ‘training ground’ and
provide participatory experience for people with intellectual disability
Better connections between academics and individual ‘experts’ , or groups of self
advocates
More theoretical development of inclusive research models
Development of skills by academic partners
Inclusion of perspectives of people with more severe intellectual disability
Explicit strategy and resources to enable inclusion in reference and advisory groups
Change to research structures - longer time lines, explicit resources
Time -money - commitment by govt, ngo’s and academics
If not addressed then significant danger of Tokenism and Pretend
Bigby, C., Frawley, P., & Ramcharan, P. (2014) Conceptualizing Inclusive Research with People with Intellectual Disability
Journal of Applied Intellectual Disability Research, 27, 3-12 DOI: 10.1111/jar.12083.
Bigby, C., Frawley, P., & Ramcharan, P. (2014) A Collaborative Group Method of Inclusive Research. Journal of Applied
Intellectual Disability Research, 27, 54-64 DOI: 10.1111/jar.12082