Writing the script. The overt and hidden contradictions of supporters’ work in independent self-advocacy groups

ABSTRACT

Background

The role of support workers in self-advocacy groups is complex. The lack of transparency about who controls the agenda within groups is problematised by commentators but the evidence is limited about how supporters act, exercise power and are regarded by self-advocates.

Aim

This study investigated the work of supporters in independent self-advocacy groups and how their work was understood by members.

Method

Grounded theory methodology was used. Semi-structured interviews were conducted with 25 members of 6 independent self-advocacy groups, in Australia and the UK, and 10 supporters.

Results

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.

Conclusion

Supporters shaped groups, developing and resourcing them while promoting empowerment and enabling self-advocates to perceive partnerships; regarding supporters work as complementary to their own.

KEYWORDS:

• Empowerment
• intellectual disability
• self-advocacy
• support worker
• supporter

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 (Clarke, Camilleri, & Goding, 2015; Goodley, 2003). Self-advocacy groups usually have paid supporters and it has been suggested that how they frame disability impacts on their practice. For example, Goodley (1997) argued strongly that it is imperative for supporters to be “believers” in the social model of disability, understanding how it “ … threatens to break down the dominant oppressive understandings of disability” (p. 376). In her study of support work, Chapman (2014) notes however, that even a “people first narrative” shared by members and supporters did not prevent hidden and overt power imbalances from framing the activities of the group.

Studies of self-advocacy in action have observed some of the challenges of enacting a liberal model of citizenship, which relies heavily on a person’s “intellectual ability and independence” (Redley & Weinberg, 2007; Williams, 2011). These authors drew attention to a range of “interactional troubles” that emerge when self-advocates do not meet the normative expectations of an empowered voice, and supporters risk slipping “back into old habits” of being didactic or directive. In spite of policy frameworks and rhetoric about empowerment and “speaking up,” staff interactions with people with intellectual disabilities can produce “pre-ordained responses” generated by prompts and “clues”, which are ultimately disempowering. For example, a study of the involvement of people with intellectual disabilities in strategic planning by local authorities in the UK highlighted the risk of entrenching hierarchies that favour more articulate individuals and marginalise others (Fyson & Fox, 2014).

Supporters of self-advocacy groups face the continuously difficult challenge of juggling facilitation and control (Callus, 2013; Collins, 2012; Simons, 1992). Questions of who sets and who drives a group’s agenda are complex and uniquely understood within different groups. There can be a lack of openness about who controls the direction of self-advocacy groups, which often rely on “good people” providing “honest and direct” advice and support (Walmsley, personal communication, 2011).

Researchers have pointed to the importance of relationships between self-advocacy group members and those with key support workers (Chapman, 2005; Goodley, 2000). For example, Caldwell’s (2010) study showed that many of these relationships had been “trusting” and “long-lasting,” engaging both parties within and outside the activities of the self-advocacy group. They had served to build the confidence of the self-advocates, helping them to develop more positive identities and enhancing their social inclusion.

There is a contention, but little evidence from research, that the “professionalisation” of self-advocacy groups undermines the empowerment of members by placing too much power in the hands of supporters. Also lacking is evidence of how members understand and respond to the exercise of power by supporters. Armstrong and Goodley (2001) and Blackmore and Hodgkins (2012) argued that in groups where the supporters are in control, it is their agendas that are enacted. Their concern is that in such instances supporters may act only in their own interests, which can be against the interests of members. While these commentators believed that the independent group model is the ideal, they do not offer examples of supporter control or close ties with funding agencies and other disability networks that undermine positive outcomes for self-advocates.

This paper draws on a subset of data from a larger study about self-advocacy groups in Australia and in the UK (Anderson, 2013; Anderson & Bigby, 2017). The focus of that study was on the experiences of self-advocacy group members. The research questions were; (1) What are the experiences of self-advocates in independent self-advocacy groups in Australia and the UK? (2) How have these experiences impacted on the social identity of the participants? (3) How do the experiences of self-advocates differ in the different policy contexts of Australia and the UK? And (4) What are the implications of these understandings for the future funding and policy support of independent self-advocacy in Australia?

The study found that 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). There was very little difference between the ways in which self-advocacy groups functioned in Australia and in the UK. The UK’s history of policy support for self-advocacy and associated (albeit) limited funding for groups had clearly impacted positively on both the strength and numbers of groups and this is something that could be replicated in Australia. While there were fewer self-advocacy groups in Australia than the UK, and less funding support (at the time of the study), there were considerable similarities in the individual experiences of self-advocates in these two contexts. The study found individual experiences to be almost identical with two exceptions. Firstly, that the scale and scope of the activities offered by the UK groups were far larger, and secondly, some of the UK groups offered formal opportunities to undertake paid and voluntary work, which was not the case in the Australian groups involved in the study.

The larger study also collected data about the work of self-advocacy supporters. Drawing on that data, the aim of this paper is to examine the complex and sometimes “contradictory” (Chapman, 2014) or “paradoxical” (Chapman & Tilley, 2013) nature of the work of supporters in six independent self-advocacy groups in Australia and the UK.

Method

This qualitative study utilised constructivist Grounded Theory methodology (Charmaz, 2000; Morse et al., 2009). The study had ethical approval from the Human Ethics Committee at La Trobe University and informed consent was gained from all participants. Information sheets and consent forms were prepared in a variety of formats including an “easy read” version.

Purposive and convenience techniques were used to generate a sample of independent self-advocacy groups in Australia and the UK, and their members and supporters as participants in the study. Inclusion criteria were that groups were independent and self-governing, which was operationalised as groups’ operations being managed through a committee or board of management comprised of members with intellectual disabilities. Participants were recruited through mail, email and phone contact with group presidents and supporters. The final sample comprised two groups in Australia, one in the state of Victoria and one in Tasmania, and four groups in the UK. They varied considerably in size, location, and access to supporters and physical resources such as meeting space. Ten supporters were interviewed, nine female and one male. They had worked with their respective groups for between 6 months and 17 years. Table 1 includes information about the six groups in the study.

Table 1. Group characteristics.

Group	Location	Office type	Paid supporters	Number of members (reported)	Social activities for members	Paid employment opportunities for members	Funding
RG	Rural town (Australia)	Co-located with advocacy service	2 casual	35	No	No	State Government
MG	Urban Centre (Australia)	Self-contained	1 part-time	71	Yes	No	State Government and philanthropic trust
IG	Rural village (UK)	Self-contained	1 full-time, 3 part-time	120	Yes	No	Local authority and lottery fund
GG	Major city (UK)	Self-contained	1 full-time, 2 part-time	85	Yes	Yes	Local authority and fundraising
BG	Urban centre (UK)	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 (UK)	Co-located with advocacy service and health clinic	2 part-time	50	Yes	No	Local authority and fundraising

Data collection and analysis

Supporters participated in semi-structured interviews that were conducted by the first author and lasted for between 40 minutes and 2 hours. Interviews included questions about the history and organisational structure of the group, the nature of their work, connections within and outside the disability sector, and relationships with group members. They were also asked about their approach to support work and about the policy framework and funding regime underpinning the operation of the group. The first author also spent time with each group in a range of settings collecting observational data about group activities and engaging in conversation with members and supporters. Detailed field notes from observations were written after time spent with each group.

The interviews were digitally recorded with the consent of the participants and transcribed. The interviews and notes from observations were coded line by line to develop descriptive categories. This was followed by focussed and theoretical coding utilising the constructivist approach of Charmaz (2006). Codes were discussed and refined by the two authors.

In presenting the findings, the names of the supporters and the self-advocacy groups have been changed to preserve anonymity. Where quotes are used, the interviewee is identified by a pseudonym and a two-letter code that distinguishes each group (e.g., BG).

Findings

Supporters assumed three main roles: supporting empowerment, managing day to day operations and leading strategic planning. The supporters demonstrated high-level skills in managing interpersonal relationships and facilitating engagement by members in a wide range of activities. However, in one group supporters limited and controlled participation of members. Self-advocates valued particular supporters skills and preferred workers who remained with the group for an extended period.

Supporting empowerment

Several supporters cited social model or critical realist theories of disability as the framework for their work. Harriet (GG) said that the “social model is there in everything we do.” Another framework was normalisation, Janet (BG), described herself as being a “major fan” of the work of Wolfensberger (1983), saying that his thinking about social role valorisation was significant in underpinning her work with the group. Some supporters were less clear about their framework for practice with many describing their role as “acting in the best interests” of the group. Despite their varied frameworks, 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:

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)

Speaking about the establishment of Indigo Group, Simone, its long-term supporter described her understanding of the importance of “ownership and control” underpinning all of the activities of the group:

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)

Some of the self-advocates reflected on the need for supporters to manage the issue of control cautiously when it concerned matters that were more relational than the minutiae of practical office tasks:

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)

Members of all groups expressed the view that they gained a sense of empowerment through the structure and activities of committees of management comprised solely of elected self-advocates. 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.

Officer bearers expressed a sense of control and power despite their need for practical help to enact the associated tasks. For example, Nick (GG) described his presidential role as presiding over management committee meetings by “reading a script provided by the supporter.” His need for this type of support did not diminish the sense of self-efficacy Nick felt about being the one chosen by his peers to read the meeting agenda. He described being supported in a role that made him feel self-confident and powerful. Nick’s description of being enabled to act with confidence in his position of president was echoed by Emma in her description of the ways that staff worked in her 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)

It was very clear that supporters made many of the major decisions about the activities and direction of all the groups. For example, supporters said:

I am in the process, have been for a little while now of talking to [staff member] in the local authority here about some funding for the group. I know she’s pretty keen to see us amalgamate with another group they already give some support to. I don’t think that people here will like that as an outcome … I don’t want to worry them … it will probably end up being the best arrangement I can come up with and then present it to members in a positive way. (Marion, supporter, PG)

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, supporters described stepping in to prevent a “crisis,” or a stalemate:

If there’s about to be a big crisis, someone’s worrying – one of the members on the committee, 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)

In most groups, despite supporters leading decision making, the self-advocates had a strong sense that the members’ committee was in charge. For example, Emma and William, members of Purple Group talked about the important role of the committee of management in their organisation:

We have a committee right and we all choose which ones, who’s the ones that’s going to be on it and then they come up with the ideas for what our group’s going to do. We give them some ideas too … just in case theirs are really rubbish! (Emma, self-advocate, PG)

The committee … that’s what’s in charge of it all. I’ve been Vice President but not anymore. We all got a say about how we run it … the committee’s in charge in the end though for our group. (William, self-advocate, PG)

The way that supporters of Purple Group described their activities sharply contrasted with how members perceived power within the group. Members spoke about making choices, having control and feeling empowered while supporters spoke about making many decisions on behalf of the group:

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)

I thought it would be a good idea to have a get together, a large one, like a conference type of thing … where people could talk about issues, any problems, ideas for activities. I went ahead … booked a venue, organised a few things and then I brought in the committee, who were keen but I think sometimes just me getting the ball rolling can be helpful. I have a strong sense of what the group is looking to do, usually do anyway [laughs]. (Ailsa, supporter PG)

The extent that she “drove” the decision making in the group concerned one supporter:

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)

Limiting and controlling participation

In both the Blue and Magenta Groups supporters imposed limits on participation that went far beyond the rules governing the election of office bearers such as how long and how many times individuals could hold office. Rather, they limited members’ participation in activities such as training programs and even membership of the group itself. For example, in Blue Group, formal, accredited training was provided to members by staff, and upon completion of a number of modules, people were encouraged to “move on” to create opportunities for others to participate. Funding to this group was conditional on their status as a provider of training to members. Supporters encouraged some members to engage with providers of education and training programs in local settings such as community centres.

Nella spoke about having “done” all of the activities in her group and that she “had to move to another group” in a different location:

I’ve done all the courses and stuff and now [supporter] says I have to find something up at the place … not sure the name but it’s where there are students in the community … they have computers and teachers up there … I’m going there soon. (Nella, self-advocate, BG)

Nevertheless, this type of control of participation was one of only very few examples of restrictive management of self-advocacy groups existing in the context of a group described by members as having the same empowering characteristics as others in this study. Members described feeling empowered in this group despite their participation and skill development opportunities being tightly regulated by supporters. For example, Ben of Blue Group said:

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)

And Nella commented:

She’s [supporter] a good one for us. I can stand up for myself … learned a lot here, it’s all organised here for us … she’s a real good one.

In the Magenta Group, supporter Jenny acknowledged that she sometimes limited decision-making opportunities for the committee members, taking away “major decisions” where she felt a particular course of action was necessary or urgent.

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)

Yvonne, an office bearer, had observed Jenny’s actions but did not regard them as problematic:

[Jenny] chooses things for us sometimes … when we’re in a hurry … she’s a good worker.

Managing day-to-day operations

Supporters were responsible for ensuring the logistics of the group’s operations, including funding, office space and other practicalities. They did so in ways that did not appear to undermine or take away control about things that were important to the self-advocates. At committees of management, ideas for activities were proposed, discussed and voted on. Supporters’ roles were to action these items:

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)

The supporters were perceived by the self-advocates as having “worked hard” on operational matters and their work as consistent with the goals and wishes of the committee:

She [supporter] works very hard and I like what she is doing … all the meetings are proper … all happening how we want and all arranged. We have a good room and biscuits in the meeting and [supporter] is good at having it all done. (Kevin, self-advocate, GG)

Darren (IG) described the way in which activities were “planned out” by the supporter but chosen by the members’ committee:

She has it all planned out see that on the wall [points to large calendar/wall planner]. Us members’ committee, the members all say what they want to do, activities, socials, go to the pub … and she puts in the days it’s happening, we can see it there. (Darren, self-advocate, IG)

Emma (PG) also observed that it is was the members who “decide” and the supporters who “keep things going” in a range of practical organisational ways:

[Supporter] is pretty good. She gets the things we need … you know money for the biscuits for meetings and paper, computer and such. I think she pays all the bills when they come in … I don’t know how to do that, maybe other people do but I don’t know … anyway, she does all the little jobs around here … keeps it all going. The committee, that’s with me too when I’m in the office, we decide what the things will be … like the things we’ll do, have a pub night or we did a big one, a meeting about bullying the other day.

Members described supporters as being helpful in organising the supply of resources to the group, from inexpensive consumables to bigger ticket items:

She gets coffee and milk and teacakes for all the meetings … she’s helpful for the group … helpful for stuff we want to get done. (William, self-advocate, PG)

They supply and loan all the computers and things. That’s actually their role, to support the group in that way, so, yeah, they are a huge support. (Liam, self-advocate, RG)

[Supporter] sorts out the taxi vouchers and such. She knows what we need to have there for each of the meetings we have. (Emma, self-advocate, PG)

Not “having to worry” about money or other resources was regarded positively by members, enabling them to engage in what they perceived as other more enjoyable and interesting activities:

We do things ourselves but it’s a lot done by [supporter] she gets us all the stuff we need for the office, money for tea and coffee and such. 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)

Some of this work happened when members were not present, which meant when they arrived at the group office or at an activity, the planning and organisation had been “done”:

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)

Self-advocates consistently used phrases such “not having to worry” about routine office tasks, appearing to anticipate that they would be reliably performed by supporters in ways that were consistent with the expressed wishes of members.

Leading strategic planning

Supporters often appeared to lead strategic planning for the groups:

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)

Supporters in all of the groups worked to limit the potential threats, posed by a lack of policy support and funding, to the groups’ activities and longevity. Marion (supporter, PG) stated that an approach where supporters and members worked “together” would be most effective in dealing with those threats:

Yes it is their group. The members’ own group but I honestly think that groups such as this one and I know a few others locally too … they need support staff with their finger on the pulse to keep some income going, otherwise we can’t continue … we are struggling now, really, with the cuts … we’ll have to move to a cheaper office. I just don’t think our members can handle that sort of stuff on their own … but together … we can sort something out.

The strategic work of supporters was recognised by one of the self-advocates:

[Marion] does the boring bits really. She’s quite good at it, being a supporter. She talks to all those people at [local authority] when our money comes up for … when the budget runs out and we need more to keep it all going. (William, self-advocate, PG)

The lack of opportunities for groups to become involved at political and strategic levels frustrated the supporters of the Australian groups who felt that this severely limited opportunities they could offer their members. It also represented an ongoing threat to the survival of self-advocacy organisations:

I don’t know about the future. It’s a real concern; it’s a concern because we are forced to do more with less. I think without the resources to be able to develop training and quality things … you know quite often we develop things and they’re great, we deliver them fantastically but without a shiny manual and the resources to be able to support it adequately you know it’s always not as good as it should be. (Jenny, supporter, MG)

The issue of funding preoccupied the minds of many of the supporters and, for the UK groups in particular, being able to secure a relatively stable funding stream was the result of many years of intense lobbying and relationship building with local authorities. These supporters appeared more conscious, than their Australian counterparts, of the vulnerability of groups in a climate of neo-liberal approaches to funding and the need for developing strategic connections to secure funding. Janet summed up the nature and necessity of building and maintaining such connections:

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, we want to work together. It’s been a long time, you know I say it’s me, it’s not just me, and it’s about the stability of the organisation. They didn’t give us an uplift but they didn’t cut us, most of the other groups did have something shaved off and some others just disappeared altogether. Some self-advocacy groups have gone [names two other regional self-advocacy groups] disappeared overnight and elsewhere about five groups went and disappeared. (Janet, supporter, BG)

Even groups that currently had funding, worried about the future, often finding that their activities were limited by small one-off grants or project-based monies. This insecurity threatened some of the positive opportunities currently offered to members:

There won’t be much if any core money in future I don’t think, we need to be creative and try and apply for bits and pieces where we can, lottery fund, trusts, things like that. I think the funding situation will start to limit what we can do, I worry about having to say to people that we can’t employ them anymore, I think that will really be a big negative in their lives, because realistically they won’t get paid work anywhere else. (Harriet, supporter, GG)

Money is really tight here. (Claudia, supporter, BG)

The two Australian groups seemed to be struggling too, with limited resources and few options for future funding, relying on applications for small, short term, project-specific grants. For Jenny, supporter of Magenta Group, this compromised both the range and quality of the kinds of activities the group offered its members and restricted the number who could participate:

The lack of funding is the other thing you know, trying to get groups together, outside of the monthly self-advocacy group, meetings is, yes, is really difficult. The [State Government] Minister has said that she sees the value in it yes, she sees it as important but it’s tough economic times and everybody has to … you know the same old spin … in the short term anyway they are not going to provide us with any more funds, they just don’t see the importance in it, certainly not the self-advocacy aspect of it. (Jenny, supporter, MG)

Charlotte and Simone, supporters of Indigo Group, described the importance of being “political” and “strategic” in their relationships and partnerships with local authority bureaucrats and with organisations such as philanthropic trusts with the aim of securing funding:

It’s been political on my part … they have to keep funding us. (Simone, supporter, IG)

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 [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)

Having a strong presence in the disability and community sectors was important in securing funding:

Got to keep at them all the time, make sure they don’t forget about all the good things that happen here. (Harriet, supporter, GG)

The Blue Group was positively regarded by the local government authority because, states Janet (supporter, BG), of its “longevity” and “stability” as a result of her management and leadership over many years, which had created a relationship where future funding was almost guaranteed. She offered the evidence that Blue Group’s funding was not cut in a recent round of swingeing cuts by the local authority, which saw several other local advocacy and self-advocacy groups lose all their funding, stating that the group had worked to make itself “almost indispensable.”

Red Group strongly contrasted with the other groups. Its sustainability was at risk due to the lack of strategic action on the part of its supporters who did not appear to be actively working to build or maintain the kind of “scaffolding” provided by supporters in other groups:

I don’t really have a magic wand to get more funds … in the past things have sorted out pretty much ok. (Andy, supporter, RG)

In this group, a supporter was less active and engaged, and both he and the members of Red Group seemed unrealistically optimistic that “things would be sorted out.”

The relaxed attitude to their funding situation by Red Group supporters was concerning to some of the self-advocate committee of management members. At the time of the interview, the small annual grant to the group was due to run out in 12 weeks’ time and no contingency plans were in place to secure more funding. The self-advocates themselves were planning to make representations to the head of Disability Services and seemed confident that the situation would be resolved:

Liam: We will talk to him to [Senior Disability Services bureaucrat] and he will give us more money. Daniel: Yeah, probably. (Liam and Daniel, self-advocates, RG)

Working partners

Self-advocates spoke about a working partnership between members and supporters. Each had valued and complementary skills. For example, William of Purple Group spoke about the alignment of supporters work with their strengths:

[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)

Kevin suggested the rationale for the division of tasks in the group was driven by the respective strengths of members and supporters:

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)

Supporters saw themselves as working in mutually rewarding partnerships:

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)

Self-advocates said that they wanted supporters who would stay with the group, get to know members and develop a deep understanding of the kinds of activities they would like to be involved in:

She [supporter] really gets to know us all. Been here for years and cares about the things we want to care about. (Yvonne, self-advocate, MG)

They have been pretty good, once they get to know us. They learn what we all like doing. (Howard, self-advocate, MG)

Members of Magenta Group recalled the skill set of a particular past supporter who epitomised the attributes of an effective supporter:

Howard: To put things you need to know in a simpler, well, to be able to explain within simple terms, for those that don’t quite understand, you know, and I mean everybody’s got different ways of understanding, but to be able to explain it in a way that they can cope with understanding it and that.

Tony: Yes, I think [past supporter] went out of her way, to enable everyone so they could actually understand things that were actually said.

Yvonne: She was always easy to get hold of too. (Howard, Tony and Yvonne, self-advocates, MG)

Discussion

The overall findings of the study from which the data presented here were drawn (Anderson, 2013; Anderson & Bigby, 2017), were similar to Chapman’s (2014), showing that self-advocacy groups can “ … offer a supportive space for people with intellectual disabilities to learn about rights and the skills of speaking up and getting heard, as well as providing opportunities to engage in managing organisations” (p. 45). These were “supportive spaces” where new opportunities were available in a collegial context in the company of valued others. (For more details refer Anderson & Bigby, 2017.) 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. Groups offered members a wide range of activities during the day and in the evening. The findings, presented in this paper, from data about the role of supporters showed that they viewed their relationships with self-advocates as a partnership in empowerment. While we found some evidence of supporters limiting participation of self-advocates in group activities, there was a much stronger pattern of supporters working both with, and for members to achieve positive outcomes for individuals and the group. From the self-advocates’ point of view, they valued the active engagement and scaffolding work of supporters, and viewed them as “professionals” with particular and complementary skill sets to their own.

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. For example, Gilmartin and Sleven (2009) observed that an “ … inevitable consequence of achieving empowerment for a person with an intellectual disability is professional disempowerment” (p. 154). In our findings, none of these risks were evident or problematised by the self-advocates or the supporters. If professional is defined as well organised, supported and resourced, then most of the groups were “professional,” and this was a positive rather than negative feature. The groups were also characterised by strong and professional relationships with local authorities and relevant government departments made through the activities and networks of experienced supporters. Members prized the high level of organisation, predictability, planning and strategic activity by supporters that characterised all groups, with the exception of Red Group. They valued the ways that their supporters worked, understanding clearly the manner in which they sought to build and maintain the background administration of the organisation. Some of the interviewees explicitly articulated an appreciation for supporters taking on, what they saw as the less desirable, boring or confusing aspects of running the organisation, preferring to focus instead on their engagement with other office activities, training programs or social activities.

Here it is important to listen closely to the insider perspective of the self-advocates themselves. Goodley (2003) was correct when he wrote that self-advocacy is always under threat, and it is also the case that self-advocacy groups are under threat. Aspects of the derided “professionalisation” of self-advocacy organisations by some supporters and funders is in fact what has allowed them to continue and in many cases flourish. The example of Red Group offers a clear insight into the precarious nature of a group with little effective “professional” support or structure, while the demise of the Purple Group since its members were interviewed for this study, shows that even with strong support internally, a lack of close relationships and networks with funding bodies can lead to group closure.

There are, as Armstrong and Goodley (2001) described, “submerged dangers” in relationships between professional supporters and self-advocacy group members, and they are inherently complex. The way power was exercised by supporters appeared to be largely transparent to members. While it would be not be correct to assume that members had a complete understanding of everything supporters did, particularly those activities happening outside the group, the openness that characterised their communication suggests a partial mitigation of the “submerged dangers.”

The findings of this study have demonstrated that skilled support does involve the use of power and control but that it can be enacted in ways that the members retain a sense of ownership and control of their group. There were numerous examples, across all groups, in which self-advocates described feelings of being trusted and respected in the group, of having personal power and status. This was as much a feature in all of the five groups where supporters seemed to drive the agenda of the group, as it was in Red Group that lacked support. Even in these groups, which to an outsider might have looked like the antithesis of an independent self-advocacy group (Buchanan & Walmsley, 2006), self-advocates themselves described being able to “speak up” and “having more confidence.” The members of these groups felt that the self-advocate office bearers had power and they actively sought either to attain or retain such positions.

Some of the groups in this study could even be regarded as “pseudo-government agencies” (Blackmore & Hodgkins, 2012). Their closeness to the bureaucracies that funded them may have limited their opportunities to speak out about issues directly affecting their members, and the lack of member control of the agenda and group activities mimicked that found in the service system. However, the user-led framework that guided of all of the activities of the groups, their collegiality and members’ sense of ownership and control radically shaped their character, setting them apart from other programs and services. The self-advocates in these groups were not passive recipients of a service, they were engaged at levels that operated to enhance skills and confidence. Members held elected positions as office bearers, and while they were supported in these roles, the status and perceived power attached to them meant they were far from token.

From the organisational perspective it would seem that “good people” (Walmsley, personal communication, 2011) made a huge difference to self-advocacy groups for a range of reasons. Only a few supporters had a strong theoretical framework for their practice, and the use by some of terms such as “working in the best interest” of the group or individual members highlight what Chapman (2014) perceived as the inherent paternalism in the nature of supporters work.

In this study, all of the groups, with the exception of Red Group had strong, “direct” supporters. Blue, Indigo and Purple Groups had clearly benefitted greatly from the very close relationship their supporters had forged with their funding bodies. Green Group also had very strong support but had maintained a more distant relationship from the local authority system by seeking funding through other sources and while this had meant that the group managed on very short-term grants, they seemed freer to pursue their own agenda and were more politically active than the other groups. Supporters exercised power to enable groups to flourish, at the same time scaffolding collegiality and members’ sense of ownership and control. These features were at the heart of effective support of self-advocacy groups and self-advocates.

Conclusion

There is a risk inherent in rejecting the kinds of models of self-advocacy seen here. While it is true to say that the groups fell far short of idealised user-led organisations, it seems unlikely that rejection of these would see them replaced with something closer to the imagined exemplar. The groups themselves were not truly “independent” but it would be a grave mistake to ignore the positive outcomes they produce for their members. Further research into the nature of support work in other types of self-advocacy groups may reveal patterns and practices that are quite different from those found in this study.

Commentators may be “dissatisfied” with what they sometimes observe in self-advocacy organisations, as Clifford (2013) has argued. However, like Clifford (2013), this study found that a closer look revealed that the self-advocates in all six groups had reframed empowerment in a highly personal way and in so doing offered “ … an engaging and highly dynamic vision of political action” (p. 5). Where the “script” was being written, self-advocates felt a strong sense of engagement with the activities and outputs of their groups The first author’s observations of the groups as they engaged in a range of activities showed that supporters were enacting the empowerment rhetoric voiced in their interviews, and that members viewed their actions and behaviours positively. There was no evidence that members experienced dissonance between the statements and actions of supporters.

There is, as Buchanan and Walmsley (2006) stated, a kind of inevitability about the power imbalance between the self-advocates and the supporters where a level of “sophisticated skill” is necessary to achieve the outcomes of budget and resource management needed to keep groups alive. Driven by a lack of policy support, the paucity of funding for groups in both Australia and the UK places pressure on supporters to be effective in securing resources. Supporters acted in ways that did not threaten the character of a self-advocacy group, avoiding the risk that for the members at least, the groups began to look like more mainstream service model groups or even day centre programs. The modus operandi of supporters had to be a complex act of mediated power, working at times in the background on securing the nuts and bolts of the group’s funding resources and at other times more directly, supporting members, developing their skills and sometimes as described in Green Group, “writing the script” to enable self-advocates to act in personally powerful ways.

There is some evidence in the findings of supporters working to create the kind of “supportive space” described by Chapman (2014). When supporters work to manage day-to-day operations and lead strategic planning, they are creating a backdrop for member empowerment. This is “pivotal in setting the scene” (Chapman, 2014) for the empowering outcomes of members’ engagement with their self-advocacy groups. Effective supporters worked to create a range of activities and opportunities within groups in which members could choose to engage; developing skills, embracing new roles and building more positive social identities. Some of the evidence suggests that some supporters exercise power and make major decisions for and about the group with little or no consultation with members. Interviews with self-advocates showed that many understood that this was happening and that they did not regard this as a problem. They spoke consistently of the group being “their group” and occupied or aspired to roles as office bearers within the group as they were perceived to have a value both encompassing and more than symbolic. While this approach to the running of a self-advocacy group may be quite different from one in which supporters work “for” rather than “with” or even “against” the members, the positive outcomes described by members of their engagement with groups are important. Privileging idealised “independent” groups over differently organised and supported groups such as those in this study risks underestimating both the outcomes for members of engagement with such groups and the high level of skill demonstrated by supporters in working in such a complex environment.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Sian Anderson http://orcid.org/0000-0003-3631-5461

Christine Bigby http://orcid.org/0000-0001-7001-8976

Additional information

Funding

Funding for this research was received from the Australian Research Council.