Understanding the development of self advocacy in victoria frawley & bigby, iassid congress 2012


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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

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Understanding the development of self advocacy in victoria frawley & bigby, iassid congress 2012

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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)