writing the script. the overt and hidden contradictions of
TRANSCRIPT
CRICOS PROVIDER 00115M
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Dr Sian Anderson
work in independent self advocacy groups.The overt and hidden contradictions of supporters’
Writing the script.
LiDS seminar April 2019
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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’?
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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.
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ResearchMethod
• 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
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Group characteristicsGroup Location Office Type Paid Supporters Number of
Members (reported)
Social Activities for Members
Paid Employment Opportunities For Members
Funding
RG Rural town (Aust.)
Co-located with advocacy service
2 casual 35 No No State Government
MG Urban Centre (Aust.)
Self-contained 1 part-time 71 Yes No State Government and philanthropic trust.
IG Rural village (U.K)
Self-contained 1 full time, 3 part-time
120 Yes No Local authority and lottery fund.
GG Major city (U.K)
Self-contained 1 full-time, 2 part -time
85 Yes Yes Local authority and fundraising.
BG Urban centre (U.K)
Co-located with advocacy service in high support-needs disability service.
1 full-time, 2 part-time
60 Yes No Local authority
PG Rural village (U.K)
Co-located with advocacy service and health clinic.
2 part-time 50 Yes No Local authority and fundraising.
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FindingsEngagement 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
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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)
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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”.
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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.
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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)
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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)
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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)
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Leading strategic planning• Supporters often appeared to lead strategic planning for the groups.
• Worked to limit the potential threats, posed by a lack of policy support and funding, to the groups’ activities and longevity.
• I take the lead where we are focussing on the future direction of the group, on our place in
the landscape. I talk to the people outside the local authority and some others to make
sure we’re viable. (Simone, supporter IG)
• Being political and strategic
• I’ve got to keep the money flowing for the members...so they can do the things they’d like
to do. Ultimately it is their self-advocacy group but me and [other support worker], if we
don’t do our job then things will slip and we’ll be in a situation where nobody’s going to be
able to be a part of this anymore... (Marion, supporter, PG)
• It’s been political on my part...they have to keep funding us. (Simone, supporter, IG)
• You have to spend a long time to get the statutory sector to trust you and realise you are
not just there to make their life difficult…It’s been a long time, I’ve been here a long time…
you know I say it's me, it's not just me, and it’s about the stability of the organisation.
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Leading strategic planning (2)
• Contrast in Red Group of a supporter who was controlling without being strategic.
• Self advocate members:
• Liam: We will talk to him to [Senior Disability Services bureaucrat] and he will give us more money. Daniel: Yeah, probably. (Liam & Daniel, self-advocates, RG)
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Working partners• Self advocates spoke about supporters having valued and complementary skills:
• We leave it all to the workers here in the office, they know who they’ve got to ask when we need it...I’ve got my other things to do really. I think I’m better for speaking up meetings and such, for running the place with the others, the people on the members’ committee, I wouldn’t have a clue what to do about the other things [Supporter] does. (Kevin, self-advocate, GG)
• [Supporter] is so organised and all the things…they get done the jobs around the office. She knows the best way to get things done for us. (William, self-advocate, PG)
• Supporters say that working together is mutually rewarding:
• We are in this together, the staff, the members. (Harriet, supporter, GG)
• Working here, in this group has been the best thing, the best experience…I feel like I’m working with people, really with them and watching them blossom… (Claudia, supporter, BG)
• So much exciting stuff goes on here. It’s been like that from day one really. People get so much out of the group and that includes me! (Charlotte, supporter, IG)
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No dissonance• Groups were ‘supportive spaces’ – new opportunities, a collegial context and the
company of valued others.
• Close positive relationships were observed between members and supporters which were characterised by the key features Williams, Ponting, Ford and Rudge (2010) described as being important for providing ‘good support’; respect, friendliness, good advice and support to speak up.
• Some evidence of supporters limiting participation of self-advocates in group activities but there was a much stronger pattern of supporters working both with, and for members to achieve positive outcomes for individuals and the group.
• Self advocates described the supporters as being people with complementary skill sets.
• No dissonance in the discourse about ‘our group’ and the descriptions of the roles and activities undertaken by supporters.
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Challenging critiques of ‘professionalisation’ in
self advocacy groups• ‘Professional’ in the context of self-advocacy groups has often had negative
connotations (Armstrong & Goodley, 2001; Blackmore & Hodgkins, 2012), and implied risks of a lack of radicalism, spontaneous action or supporters acting in their own interests rather than those of members.
• Reclaim ‘professional’ in the context of this study; well-organised, supported and resourced.
• Self advocates highly valued the work done by supporters. The ‘boring bits’ were taken care of.
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‘Submerged dangers’• ‘Submerged dangers’ (Armstrong & Goodley, 2001) in ‘professional relationships’
between self advocates and supporters.
• Self advocates had an incomplete knowledge of the supporters’ activities, but open communication and the collegial context of the group seem to be mitigating factors.
• Self advocates spoke about having feelings of ownership and control, power and status even in Blue Group. A user led framework in groups.
• All of the groups challenge the label of ‘independent’, some could be described as ‘pseudo-government agencies’ (Blackmore & Hodgkins, 2012)
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Conclusion• ‘Independent’ groups – an imaginary exemplar?
• An ‘inevitable’ power imbalance (Buchanan & Walmsley 2006) where there is a sophisticated level of skill needed to resource and sustain a group in both UK and Australian policy contexts.
• Supporters work is in the background and the foreground of the wide range of activities undertaken by the groups.
• Whilst groups such as these are criticised for a perceived lack of ‘independence’ there are highly positive outcomes which shouldn’t be devalued.
• Supporters set the scene for an important framing of personal empowerment.
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Many thanks to the self advocates and supporters of the six groups who took part in this study.
