Understanding the development of self advocacy in Victoria, Frawley and Bigby with the Reinforce History Group. Presentation at the IASSID congress in Halifax Canada, 2012

1. Understanding the
development of self advocacy
in Victoria, Australia: the early
years.
Prof Christine Bigby, Dr Patsie Frawley, Dr Paul Ramcharan with the
Self Advocacy History Group
.

2. Background – Self Advocacy
Origins of self advocacy
•Scandinavian countries early 1970’s - parent run, recreation and educational
groups, developmental model
•Similar origins in Eastern Europe and later in Japan
•UK & US - cast more as social movement , outside service system, focus on
independence
• Until now no clear understanding of origins of and influences on self advocacy in
Australia
•Characteristics of self advocacy: independence, networked, collective change,
outward focus, independent organisations
'over the past thirty years a new social movement has emerged...The self advocacy
movement has invited people to revolt against disablement in a variety of ways, in
a number of contexts, individually and collectively, with and without the support of
others' (Goodley, 2000:3).
•Parallel development within services – worker/client councils, user groups –
different focus and structure

3. Key themes in development over time
Key themes in development over time
•Resemblance to social movement – aims and characteristics
•Organisational form -independent or service based
•Allies and supporters –parents, government, service providers, disability
movement
•Influence of policy
‘advocacy goes through generations where it has to change because
the world around it is changing' (Bylov, 2006, p.142).
 Source of funding and support
 Focus of activities
 Legitimacy – recognition or incorporation into formal structures of
government
'self advocacy has become a tool to find out about what people with
learning difficulties think of services rather than a challenge the
philosophy of services', (Aspis, 2010: 652).

4. Study Background
Reinforce first self advocacy organisation in Victoria, Australia
• Formed in 1981
• Significant changes to organisational form, activities, allies, legitimacy and
partnerships
• Small consistent active core membership – some founding members still involved
‘what was always strong in Reinforce is no matter how bad things might have been
going otherwise, that core of people, who were central.... were so strong that it
eventually pulled through….it had such an impact across not only in Victoria but
Australia in showing that people with an intellectual disability can really speak up,
and have something to say and the right to be listened to (Ally)
• Members interested in ‘bringing together and using their history’
‘it’s important to know that self advocacy has been going for a long time for the new
people coming in…. when the ‘old people retire’ it will be important for the younger
ones (Self Advocate – history group).
• Insights from history – how to strengthen self advocacy in the future and sustain it

5. Aims and Method
Aims
• Identify key periods in history of Reinforce
• Consider influence of policy context on Reinforce and wider self advocacy
Research Approach
•Collaborative Group’ model of inclusive research - 3 academics 5 self advocates (see separate
paper); worked together from 2007-2012
Method
•Group Interviews with 27 people - self advocates, allies, and supporters
•Organisational documents, management committee minutes, reports, DVDs, videos.
•Review of State and Federal disability policy
Analysis
• Categorical and thematic analysis – policy, people, support, funding
• Chronology of events
• Explored influence of policy and funding

6. Organisation of findings
Five key periods in the history of Reinforce
• 1968 – 1978 Foundations for self advocacy being set
• 1979 -1981 Legitimacy of people’s voices/stories - beginning of
formal self advocacy
• 1982 – 1990 Formal organisation, strong voice, radical action
• 1991 -2000 Survival, competition , inward focus
• 2000’s - Staying relevant
Each period characterised primarily by differences in
•focus and nature of activity
•organisational form
•partnerships and allies
•legitimacy and recognition by government

7. Parents and Professionals Laying the
Foundations: 1968–1978
Policy Context
Self Advocacy
•
•
No Self Advocacy
•
•
•
Predominantly institutional and segregated services
Parent Advocates growing voice
…I got desperate about the fact that I was getting stuff from
overseas from everywhere ..Canada, the USA. Britain, some
Sweden.. New Zealand and, occasionally from Denmark, I was
getting wonderful ideas about things that were happening in this
area of life overseas and other countries and I kept putting bits and
snatches in the newsletter about them (ET))
New ideas from overseas - normalisation, human rights, community living
Social workers and other younger professionals advocating for change
and leading innovation
‘We also did a big lobby in mid ‘70s, around the waiting list’ GP
Policy beginning to shift
‘deinstitutionalisation was starting to make sense, for
different people for different reasons” (BL).
•Victorian Committee on Mental Retardation, 1975 reported 1978
• Halt to institutional building
• Adoption of normalisation philosophy
• ‘Drop In Centres’ to house casual social activities and provide an
informal resource’ for adults with intellectual disability’ (Evans
1977).
•People moving out of
institutions – into the
community

8. Legitimacy of people speaking out for
themselves: 1979 to 1981
Policy Context
Policy reform agenda developed
•
Gearing up for change –normalisation,
deinstitutionalisation
•
State of flux –reconfiguring bureaucracy – Director
of Mental Retardation; Funds for innovation – new
service models/community based with consumer
representatives
Allies young professionals/social support model
Space and freedom for young professionals to
operate with political edge
•
Set up a meeting place, development of peer
network for ‘fearfully independent’ young adults
with intellectual disability
•
Bringing people together at camps – chance to
speak out and share experiences; Social activities
“ [our work] had a bit more of a political, edge, so you
know we were sort of crossing over, between our role as
employers of the Division, and sort of, you know, and
supporting movements like Reinforce…..we thought we
were a pretty gung-ho in terms of leading-edge changeagent stuff ...this was exciting, new opportunities to
improve supports and services for people with a disability
in Victoria, and it was ....around driving....that agenda
(Ally/supporter).
Community awareness of disability - IYDP
Reinforce/Self Advocacy
• People meeting at a Middle Park Social Club
“Middle Park was a beautiful drop in place....it
was a social club.... that is when we really,
really got together as a group” (self advocate)
• First group founded Easter 1981 - Force 10 a
Union of Intellectually Disadvantaged Citizens
• No formal organisational structure
• Open fluid membership
‘it didn’t matter where you sat on the scale of
how committed you were to the cause, you could
be you know, 20% or 98%, and you were still
welcome to come along (Supporter)
• Speaking out – together and in public;
development of a ‘Code of Rights’
• Allies - parent advocates, academics, young
professional workers
• Forging new ground first self advocacy group
• Partnership with growing disability movement
IYDP
‘It was the busiest year of my life. ....At the
beginning of the year I had no idea how
important the fight for disabled people’s rights
would become to me. There was a super march
in Melbourne....Disabled people became visible
for the first time’ (Excerpt – self advocate memoir)

9. Radical Self advocacy and Reform of the Service System
1982 to 1990
Policy Context
State and Federal Labor governments with
reform agendas
consultation and advisory mechanisms / new legislation
and policy/ services, rights, protection, public advocacy
Policy defined self advocacy
‘services to assist people with disabilities to develop or
maintain the personal skills and self-confidence
necessary to enable them to represent their own
interests in the community’
•
Part of service sector –both as advocacy and
community education
Funding to self advocacy umbrella resource
bodies
•
National - Self Advocacy Resource Unit & People First
Victoria /Small amounts funding to Reinforce and
other grass roots groups
Allies/supporters reduced freedom - many
drawn into more senior and formal positions
‘There wasn’t any systematised, organised clarity
around the support, .. people from Middle Park had
gone onto other jobs, other areas were still connecting
at one level or another, but the specific support in that
sort of initial network wasn’t there, it was piecemeal and
Reinforce/Self Advocacy
• Formal status – incorporated body
1987 to receive funds
• Outward focus - radical - direct action sit ins- demonstrations- campaigns
• Conferences – public talks- radio
show- videos
Well I think it was by being so vocal,
everywhere…... so radical, whenever you went to a
conference Reinforce were there, usually at the
front, you know, speaking up. Reinforce were now
more and more getting a position as speakers, at
things…(Ally)
•
•
•
•
•
International connections
Sporadic funding
Gradual disconnection from informal young
professional allies.
Shared office space and partnership work
with disability advocacy and community
sector NGO’s
Recognition and Legitimacy- Representation

10. Keeping afloat – survival in a time of competition and
rationalisation 1991 - 2000
Policy Context
Neo Liberal state government
•
•
•
•
new right managerialism
economic downturn
efficient and effective services
advocacy ‘piss and wind’
Rationalisation of state commonwealth
responsibilities for disability services – advocacy
shared
•
Dedifferentiation shift focus to all disability
•
Move from unconditional deinstitutionalisation
Peak body policy - one not many voices
they just wanted to deal with one group, because it’s a much
easier, and much easier to control and everything (Ally)
Funding cuts to umbrella groups – small trickle of
funding to Reinforce
I was sort of a person in head office who was responsible for
looking after your service agreement…. I think we gave
Reinforce a paltry, I don’t know, would it be 10,000 a year or
something Reinforce was the only advocacy service that
survived, the cuts, pretty much, oh they kept a trickle.
(Supporter)
Federal reform of advocacy
Reinforce
Focus on survival of the organisation
•
•
Paying the rent/ raising funds
Managing internal conflict and difficulties
“We had to scrimp and save … We had to stop going
to conferences for a while. Basically we had to stop
paying people’s travel fees like we used to do.
Because we just couldn’t afford it. Yeah a lot of
people [stopped coming]. They just went their own
way”. (DBanfield – Self Advocate)
Limited differently focussed support
•
•
project based not strategic
still some allies in bureaucracy
Fewer partnerships
• everyone fighting for survival/competition for
funds
•refused strategic partnership with parent
dominated advocacy group
Less legitimacy with government
•Growth of a new group – parent dominated/
loss of representative
Yes, every time we put in a submission, it always
seemed to go to [other organisation], and we were
always concerned that they must have a link with the
Department somewhere, because all the funding
seemed to go to [other organisation] (self advocate)

11. Staying relevant : Inclusion and Advocacy
Become Mainstream 2000s
Policy Context
Renewed policy commitments/Social justice,
inclusion and rights underpin policy
• Whole of government policy “Fairer Victoria” &
Victorian state disability plan 2002- 2012 –
participation and inclusion
• Lack of passion - government struggling with
translation and implementationyou know, a lot of work, and a lot of ideas, but it ended up being this
really high, level, document that…(Ally)
• Revitalisation of advocacy– peaks (women,
youth)
“There was an emphasis on a youth advocacy service, an
independent, youth advocacy service, a women’s, systemic,
advocacy service, an indigenous advocacy service, we did actually
focus on a self advocacy service that was for people from, new
called, you know, culturally or (distinctly?) diverse backgrounds
(Bureaucrat )
• Consultative
: ....So there needs to be something in place that sort of pulls the
system, at the end of the day, and I think Reinforce is now sort of
embedded anyway , whether I’m around or not. (Senior bureacrat)
• Service System Reform – individualised
Reinforce
Search for relevance, need for renewal
focus on organisation and
succession
• difficulties –managing money and
workers
• personality driven leadership – loss
of collective approach
• hard to define central cause or focus
as ideas colonised
• Drawn in to support new groups
• Focus on training, projects and
working with umbrella body
Partnerships – in name only?
‘Run over by wheelchairs’’
Government using for legitimacy
“the shift from the group being more or less like a
self help group, a campaign group, to being a more
the government group? (Disability advocate)
“People are saying the right things, but not with
the same sort of energy and passion, and that
that makes it a lot harder for groups like
Reinforce “(Ally

12. I’d say it’s, to a certain extent, Community Services have possibly used
Reinforce over the years for different things”. (David Banfield – self advocate) :
Conclusions
Independence
•
Defined into service system despite initial government recognition of implications vis
independence
•
Colonisation of cause –removes targets and saps strength
Sources of legitimacy
•
Once legitimate because of personal stories own voices and experiences
•
Legitimacy dependent on government – given and taken away /Cost of legitimacy – tokenism?
Organisational form
•
Independent self advocacy organisation – committee of self advocates
•
Struggled with organisational issues – funding/financial management, personnel, leadership
•
Internal focus – staying afloat regardless of function/same form regardless of function
Partnerships and allies
•
Changed over time – radical and resourced young professionals to project support
•
Within and outside disability movement & disability advocacy
Static group
•
Core group – strong relationships/ not representative /no experience of system but advising on it

13. Implications
Form and function of self advocacy is influenced by policy
•
Has impact on the strength of self advocacy, its relevance and capacity to
participate – have a voice about policy of the day
•
Self advocacy needs to be able define its own place and own strengths rather than
being coopted
Policy makers and services need to better understand and accept what self advocacy
is to include it in ways that fit its form and function and resource it accordingly
Self advocacy has been at its strongest when it has
•
Had strong, strategic and collegial support and relationships with diverse allies
including government, academics, professionals, disability movement
•
Been able to participate alongside others on causes that matter to them
Interdependence has worked in the past – allies need to find ways of being ‘with’ self
advocacy to support their work and to include self advocacy in broader work –
research, practice and policy that is meaningful, collaborative and sustained

14. Thank you
[Future of self advocacy] ....at very least involve keeping those same things that
made the organisation strong, you know its grass roots, strong, kind of drive,
you know, so the people at the core who were; so it’s got to be driven by
people who are affected by the issue, and have good support that makes that,
you know, enables that, empowers that. you know...it’s just that’s got to be
there, but I don’t know what the answer is other than, you know, to be able to
be good at working out: “Well what are the issues now, that are really important
to people with intellectual disabilities, what will make life better now, is it about
getting more services, or is it about getting the community more accessible”
(Ally)