No researching about us without us
Symposium on World Report on Disability, University
of Sydney, 5-6 December, 2011
Patricia O’Brien1, Edurne
Garcia Iriarte2, Marie Knox1,
Roy Mc Conkey3, Darren
Chadwickl4, Minerva Rivas1.
1 Centre
for Disabilities
Studies, University of
Sydney
2 National Institute for
Intellectual Disability,
Trinity College Dublin
3 University of Ulster
4 University of
Wolverhampton, England
Members of the inclusive
research networks CDS
Environmental factors
& interactions
 Quality of life and
well-being;
 Barriers to
mainstream and
specific services
 Accessibility &
universal design
 Health
 Poverty and cost of
disability

 Research
requires
focused investments
in human and
technical capacity,
particularly in lowincome and middleincome countries...
linking universities
in developing
countries with those
in high-income and
middle-income
countries
This motto is at the
core of Inclusive
Research which
promotes full
participation and
equalization of
research
opportunities for,
by and with
persons with
disabilities.
Charlton, 1998
Collective action
People with the
lived experience of
disability
Own the research
question
 Have a vested
interest in the
outcomes
 Participate in one
or all aspects of
the research
process

Workshop
 Listening
One
skills
 Questioning skills
 Working with
groups of people
 Looking for a
question to
research

What is research

Looking up stuff
Studying a topic
Finding things out
Talking to different
people to see how it
affects them
Discovering information
Helping service to find
ways to make life
better for clients
Help with interviewing

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Awkward with people
I didn't know
 I extended the
questions
 Found it hard with
people I don't know
 Good – I used the
person's name
 Asked more questions
 Enjoyable
 Good experience
 Really interesting

 Different
ways to
research
Life stories
 Action research
 Photo voice
 Surveys
 Interviews
 Focus groups
 e stories

 ‘Ethics’
– what is this
all about?
Workshop
 What
Three
I have learnt so
far
 Sharing research
experiences to date
 Making a research
proposal
 Celebration
Inclusive research network
agreed to do a survey on
how the lives of people
with intellectual disabilities
in NSW match the CRPD
Money
Advocacy
Health
HOUSING
JOBS
EDUCATION

All we want to say
(NIID, 2009, 2010):
commissioned by European
Union (EU)

Where we live( IRN, 2009):
Initiated by co-researchers
with intellectual disabilities

Relationships and support
(IRN, 2010): Initiated by coresearchers with
intellectual disabilities
Research questions
chosen as relevant
by people with
intellectual
disabilities
People with
disabilities and
university
researchers team as
co-researchers
Training /coaching
for co-researchers in
how to collect data,
analyze and
interpret
Data collection is
accessible as well as
dissemination
Knowledge of people
with intellectual
disabilities
continually surprises
research partners.
Dissemination of
findings crosses over
into self advocacy.
 All
We Want to Say
 16
focus groups; 97
participants
 Facilitated
by a coresearcher with
disability and a
university coresearcher
Dissemination
•Video: 3 groups
•Collage: 1 group
•Drama: 1 group
•Power Point: 2 groups
Examples of Goals
Home
To organize group discussions to talk about home
issues and invite families.
Money
To set up a peer support group with people who had
already a bank link card and people who wanted a bank
link card. They could help each other.
Respect
Go to Inclusion Ireland march to Dail on 7th April. Watch
the march on TV if you can’t go. Write a paper about the
March and give it to the newspaper.
Work
Make links with community –be seen and heard.
Advocacy
To get better at speaking up for our rights and the rights
of others. Bringing any concerns to staff/ managers on a
regular basis. Getting the skills to someday be on a
interview panel.
Step 1: Identify and
work with person
who will support you
Step 1: Read information
& consent forms
Step2 : Find
people to
interview
Step 2: Support coresearcher to find people
Step 3: Get
peoples’ consent
Step 3:Support coresearcher to gain consent
Step 4: Do the
Interview
Step 4: Support coresearcher to interview
Co-researchers’ handbook
Supporters’ handbook
“We need to do research about where people live because it tells
us what people like and don’t like about where they live, and
how people can live in a place of their choice.”
Pauline O and Michael F … co-researchers
The results were presented to the National Disability Conference
on the 6th October, 2009
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People in the focus groups
talked about:
how they used to have a
boyfriend or a girlfriend
of getting embarrassed
talking about boyfriends
and girlfriends
of being treated like
children over boyfriends
and girlfriends
of not having a boyfriend
or girlfriend and wishing
they had one
of not wanting a boyfriend
or a girlfriend
of their right to get
married.

There needs to be
investment in
inclusive research in
order that it can play
a part in low /middle
income countries so
that no researching
about us without us is
not an evolving
process but one that
is understood as an
enabler of making a
difference in the lives
of people with
disabilities.
No research
about us
without us
Trinity references can be downloaded on
www.tcdc.ie/niid/research
Charlton, James I (1998). Nothing about us without us
Berkeley & Los Angeles, California: University of California
Press
Inclusive Research Network (2009) Where we live: A
national study done by members of the Inclusive Research
Network through surveys. Dublin: National Institute for
Intellectual Disability Ireland; Galway: National Federation
of Voluntary Bodies ( www.tcd.ie/niid)
Inclusive Research Network (2010) Relationships and
Supports Study: People with Intellectual Disabilities in
Ireland. Dublin: National Institute for Intellectual Disability
Ireland; Galway: National Federation of Voluntary Bodies.
.
National Institute for Intellectual Disability (2009)All We
Want to Say: People with Intellectual Disabilities Presenting
Research Findings in Ireland. Dublin: Trinity College Dublin.
National Institute for Intellectual Disability (2010) All we
want to say: Life in Ireland for people with intellectual
disabilities. Dublin: Trinity College Dublin.

For further information
on any of these studies
contact:
Professor Patricia
O’Brien, CDS
patricia.obrien@sydney.edu
.au


http:www.cds.org.au
Phone: CDS: 903 63600