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

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

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).

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

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

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

Parents and Professionals Laying the

Foundations: 1968–1978

Policy Context 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).

No Self Advocacy

•People moving out of

institutions – into the

community

Legitimacy of people speaking out for

themselves: 1979 to 1981 Policy Context Reinforce/Self Advocacy

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 change-

agent 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

• 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)

Radical Self advocacy and Reform of the Service System

1982 to 1990

Policy Context Reinforce/Self Advocacy

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

then fell apart’ …

• 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

on state & federal policy advisory

committees

Keeping afloat – survival in a time of competition and

rationalisation 1991 - 2000

Policy Context Reinforce

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

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)

Staying relevant : Inclusion and Advocacy

Become Mainstream 2000s

Policy Context Reinforce

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 implementation- you 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

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

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

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

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)