Doing the History – A

Collaborative Group Model of

Inclusive Research

. Self Advocacy History Group members

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?

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

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)

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)

•

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

Working as a group with trusting relationships and dispersed power

Flexible adapted research methods

Scaffolding for Inclusion

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

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

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

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!

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

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

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.

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

‘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

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

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

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.

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