Writing the script. The overt and hidden contradictions of - PDF document

latrobe.edu.au Writing the script. The overt and hidden contradictions of supporters’ work in independent self advocacy groups. LiDS seminar April 2019 Dr Sian Anderson CRICOS PROVIDER 00115M

latrobe.edu.au Introduction — Self-advocacy is created ‘by’ and ‘for’ people with intellectual disabilities and challenges ‘exclusionary’ models of culture, promoting those in which oppressive understandings of disability are challenged (Goodley, 2003, Clarke, Camilleri & Goding, 2015). — Independent groups are idealised. — Self-advocacy groups usually have paid supporters and it has been suggested that how they frame disability impacts on their practice. — Even a ‘people first narrative’ shared by members and supporters does not prevent hidden and overt power imbalances from shaping the activities of the group (Chapman, 2014). — ‘Interactional troubles’ (Redley & Weinberg, 2007, Williams, 2011). What happens when individuals don’t meet the normative expectations of an ‘empowered voice’?

latrobe.edu.au Introduction (2) — Supporters of self-advocacy groups face the continuously difficult challenge of juggling facilitation and control (Callus, 2013; Collins, 2012; Simons, 1992). — Authors point to the importance of relationships between self-advocacy group members and those with key support workers (Goodley 2000; Chapman, 2005). For example, Caldwell’s (2010) study showed that many of these relationships had been “trusting” and “long-lasting”. — The perceived problem of ‘professionalisation’ of groups.

latrobe.edu.au Research Method • Six self advocacy groups, 4 in the UK and 2 in Australia. Groups were ‘independent’ groups. • Semi-structured interviews with a focus on identity with 25 self advocates and 10 supporters. • Analysed the data and developed a GT model • Second stage analysis focussed on supporter roles and actions

latrobe.edu.au Group characteristics Group Location Office Type Paid Supporters Number of Social Activities Paid Employment Funding Members for Members Opportunities For (reported) Members RG Rural town Co-located with 2 casual 35 No No State Government (Aust.) advocacy service MG Urban Centre Self-contained 1 part-time 71 Yes No State Government and (Aust.) philanthropic trust. IG Rural village Self-contained 1 full time, 3 120 Yes No Local authority and lottery (U.K) part-time fund. GG Major city Self-contained 1 full-time, 2 85 Yes Yes Local authority and (U.K) part -time fundraising. BG Urban centre Co-located with 1 full-time, 2 60 Yes No Local authority (U.K) advocacy service in part-time high support-needs disability service. PG Rural village Co-located with 2 part-time 50 Yes No Local authority and (U.K) advocacy service fundraising. and health clinic.

latrobe.edu.au Findings Engagement in self-advocacy groups had significant positive outcomes for individual members; including opportunities to participate in a wide range of activities, develop skills and confidence and embrace a range of positive social identities (Anderson, 2013; Anderson & Bigby, 2017). Study found few differences between the UK and Australian groups. Supporters had three roles; supporting empowerment, managing operations, and leading strategic planning. They exercised power, controlling many group activities, but did so in ways that enabled groups to flourish, and scaffolded members’ sense of control. Anderson, S., & Bigby, C. (2017). Self‐advocacy as a means to positive identities for people with intellectual disability: ‘We just help them, be them really’. Journal of Applied Research in Intellectual Disabilities , 30 (1), 109-120. https://onlinelibrary.wiley.com/doi/pdf/10.1111/jar.12223

latrobe.edu.au Supporting empowerment • A theoretical framework for practice? • All spoke of a desire to empower members both within and outside the group and to create a strong sense of governance and direction by group members, clearly articulating that members wanted to be in control of the group and its agenda. From early on…it soon became clear though that what people really wanted was self- • advocacy, peer support and speaking out and a group that they ran and controlled. (Simone, supporter, IG) • It is their group, whatever I do, organising, budgeting, look at my list of jobs to do…whatever else it is not just in name…it is their group. (Marion, supporter PG) • Self advocates reflecting on the issue of ‘ownership and control’: So everyone gets a chance to speak up and run things in the group...that’s what the staff • do, they should do that always I think. (Trish, self-advocate, GG) She doesn’t tread on our toes, we all can speak and say what’s on our minds. (Yvonne, • self-advocate, MG)

latrobe.edu.au Supporting empowerment (2) Committees and titles • Elected officers with titles such as President and Chairperson were perceived as powerful statements about who set the agenda in the organisation. Supporters worked to make these democratic group processes effective, and asserted that positions of office were more than symbolic. • ‘Writing the script’ Nick (GG), for example, described his presidential role as presiding over management committee meetings by “reading a script provided by the supporter”.

latrobe.edu.au It’s our group… • At the end of the day...you know...it is our group you know, but its them, the staff that runs it...they run it for us...we decide what to do but its them, you know what runs all the things, day to day. (Emma, self-advocate PG) • We run the show! The committee, I’m on the committee and we make lots…we make some good choices about things we can do. (William, self-advocate, PG) • A sense of power, control, self-efficacy in roles chosen by peers despite the need for practical assistance from supporters. • Office bearer roles were more than symbolic because of the way they were framed by members and supporters.

latrobe.edu.au Making the major decisions • Supporters spoke about making all the major decisions in the group • I might take over a bit and step in and be a bit bossy, directing. The group is fragile in lots of ways unfortunately and I have to make some choices, sometimes quick to keep it all going. (Andy, supporter, RG) • I have had to make a few decisions, you know to move things along. I don’t like to push things through but occasionally, if it’s in the best interests of the group I do say ‘right, we are going to go here or do that’. Usually [Marion] and I chat beforehand… (Ailsa, supporter, PG) • Sometimes I’ve just got to be the one in control, you know, make a few decisions about things, different issues that come up...as long as the committee still feels like they can make a decision or two, then I think we can keep going along. (Jenny, supporter, MG) Too much control?? I do think sometimes that we [supporters] drive the group a bit • too much…everyone seems happy though, everyone has their say… There are things I know I can get done quite quickly and not have to bother…you know…sometimes, especially decisions about the budget…a staff person needs to steer things. (Ailsa, supporter, PG)

latrobe.edu.au Limiting & controlling participation • Some examples of limiting and controlling. Not deemed problematic by self advocates. • Two groups; Blue and Magenta. Blue group most extreme. Limits placed on length of membership, progression through training and then exit. Not seen as problematic by self advocates, for example: • She [supporter] does a heap of the organising, all the day to day things for organising • in the office but its ok ‘cos she’s not like other staff…got our best interests there [points to heart] see? (Ben, self-advocate, BG)

latrobe.edu.au Managing day to day operations Supporters acting on the decisions of the committee. Action items – • supporter will do it! • ‘Working hard’ ‘doing the boring bits’; tea , coffee, biscuits, computers and transport. • We have our meetings, all the committee and then [supporter Andy] does it all for us. He organises it. (Daniel, self-advocate, RG) • They make things run like clockwork, the people in the office at [Indigo Group]. It runs like clockwork and then we can get on with doing all the things...like the leisure things and the speaking up group we have every week. (Darren, self- advocate, IG) We don’t have to worry about any of that kind of thing, it’s all done... I don’t • know what to do about that! [laughs]. (William, self-advocate, PG) • Organising stuff that’s what we need. [Andy] works it out for the meetings and stuff to happen…who needs to ring up, taxis, what time for the meeting. I don’t know I just come along and it’s good. (Liam, self-advocate, RG)