Article

What’s in it for me? The meaning of involvement in a self-advocacy group for six people with intellectual disabilities

Journal of Intellectual Disabilities 2015, Vol. 19(3) 230–250 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629515571646 jid.sagepub.com

Rachel Clarke Glenbourne Unit, UK

Kelly Camilleri University of Exeter, UK

Lois Goding University of Exeter, UK Date accepted: 09 January 2015

Abstract Background: This article explores the experiences of six people with intellectual disabilities in the context of a self-advocacy group, identifying the benefits and difficulties of being part of the group. Materials and Methods: Six adults with intellectual disabilities were interviewed about their experiences. Each individual took part in two individual and two group interviews. The transcripts were analysed using thematic analysis. Results: Analysis revealed four themes, namely, being part of the group, self-esteem, self-determination and empowerment. Conclusion: Being part of the group is central to the experience of self-esteem, selfdevelopment and empowerment. Responses allow the exploration of the interrelationship between individual, group and community. Consideration is given to models of disability and the evidence base in relation to personal and political outcomes of self-advocacy. Links are made with developing a sense of self, self-determination, interpersonal learning and building resilience. Implications for practice are discussed. Keywords intellectual disabilities, models of disability, self-advocacy, self-determination, resilience

Corresponding author: Rachel Clarke, Glenbourne Unit, Morlaix Drive, Derriford, Plymouth, PL6 5AF, UK. Email: [email protected]

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Introduction Participation has been conceptualized as a ladder (Arnstein, 1969) with rungs from being informed to transfer of power. People First define self-advocacy as speaking and standing up for yourself (Beart et al., 2004), effectively a high rung on Arnstein’s ladder. Definitions of self-advocacy emphasize the self-determination of people with intellectual difficulties (Goodley, 2000) and the relocation of power (Goodley and Armstrong, 2001); however, questions remain around the impact on peoples’ lives (Goodley and Armstrong, 2001; Ramcharan, 2005). This article will consider the history and context of self-advocacy and the related evidence and literature base.

History and context of self-advocacy The mid-1980s saw a growth in self-advocacy in the United Kingdom (Buchanan and Walmsley, 2006). Self-advocacy is a social movement (Goodley and Armstrong, 2001) originating to promote self-empowerment and resilience (Goodley, 2005); therefore, there exists a potential connection between self-advocacy and an individual’s relationship with models of disability (Chappell et al., 2001). Medicalized models of disability position people with intellectual disabilities as passive and incompetent (Goodley, 2005; Goodley and Armstrong, 2001), whereas the social model rescripts disability as the interaction; between the individual and the environment (Hahn, 1993). Selfadvocacy focuses on this interaction; however, for any individual, the exact nature of his/her experience of self-advocacy will reflect the type of advocacy group to which he/she belongs (Goodley, 2005). Goodley and Armstrong (2001) define four types of group based on factors such as the location and support; however, Buchanan and Walmsley (2006) offer a more accessible distinction, namely, between service-based and independent groups. Independent groups are those that employ their own support, therefore Buchanan and Walmsley (2006) conceptualize these groups as less constrained than service-based groups, which necessarily entail compromise between self-advocacy objectives and the targets of funders. Self-advocacy includes a broad range of activities, ultimately creating a tension between self-advocacy as a means for self-development and as a means for collective representation (Buchanan and Walmsley, 2006). The tension and integration between the self-development and collective representation processes incorporated in selfadvocacy are reflected in the related research, identifying outcomes that are both personal and political. On the political level, self-advocacy enables people with intellectual disabilities to connect with the social model of disability through collective action (Chappell et al., 2001). Self-advocacy incorporates empowerment through collective lobbying for change (Brandon, 2005). Goodley’s (2000) research with five self-advocates identifies that self-advocacy offers points of selfreference, which contrast with wider assumptions of inability, alongside opportunities to develop frameworks of meaning. The context of self-advocacy groups allow the acknowledgement of resilience and resistance, important factors in people with intellectual disabilities’ life stories (Chappell et al., 2001). Resilience is ‘the positive pole of individual differences in people’s response to stress and adversity’ (Rutter, 1987: 316). As well as acknowledging resilience, Goodley (2000, 2005) suggests self-advocacy offers people with intellectual disabilities the potential to build resilience through opportunities to develop relationships, make sense of their social identity, influence individual self-concept and increase self-determination skills. Self-determination is a person’s

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ability to make choices and take control over their life (Burke, 2005) and contributes to positive outcomes for people with intellectual disabilities (Wehmeyer and Gragoudas, 2004). Selfadvocacy empowers people with disabilities to speak for themselves (Rappaport et al., 2005); however, from a critical perspective, a poor self-advocacy experience can reinforce negative labelling (Mosley, 1994). The label of intellectual disabilities carries a range of potential implications for identity, and many people with intellectual disabilities struggle to define the meaning of the label, which in turn challenges the premise of self-advocacy that people labelled as such will group together to speak for their own and others rights (Beart, 2005). For many individuals, collective action is only seen as important after joining the group (Beart et al., 2004). On the personal level, self-advocacy offers potential outcomes for people with intellectual disabilities around self-esteem, self-worth and self-identity. Goodley’s (2000) life story research with self-advocates identifies change in self-identity. The process of self-advocacy and self-esteem mutually influence one another (Mosley, 1994). The experience of positive emotion, such as selfesteem, serves to create growth and lasting resources (Fredrickson, 1998; 2001). Self-advocacy groups offer the environment for the development of these resources. Beart et al.’s (2004) research identifies a process of change in individual self-concept, both internally and in interaction with others, which develops from the support and sense of status offered in a self-advocacy group. Self-advocacy allows individuals the chance to manage difficult experiences by using them as a way to help and inform others; however, it can also result in reviewing past event and becoming aware of unfairness; therefore, the meaning of self-advocacy entails a level of diversity (Beart et al., 2004). Self-advocacy is complex and grows organically (Goodley and Armstrong, 2001). It offers a unique interpersonal environment with consequences for an individual’s sense of identity and development of self. In the process of self-advocacy, individuals deal with many different forms of power, engage with areas of oppressive discourse, and through developing relationships with others construct different selves (Roets and Goodley, 2008). Roets and Goodley (2008) cite that self-advocates effectively break down borders and develop new knowledge. Self-advocacy provides individuals with the opportunity to make choices, speak up, have a voice, find new pathways and, therefore, develop positive self-identity and disability pride (Caldwell et al., 2012). Caldwell (2011) explores the life stories of self-advocacy leaders from the perspective of disability identity formation, identifying five themes of resistance, connection with disability community, reclaiming disability and personal transformation, interconnection with the broader disability rights movement and bond with social justice and interdependency. The personal and the political are closely entwined.

Models of disability Self-advocacy experiences are linked to models of disability through the social model’s focus on the political and social origins of meanings and experiences (Goodley and Armstrong, 2001); however, this approach has been criticized for not reflecting the complexity of impairment and disability (Shakespeare and Watson, 2002; WHO, 2002). Beart (2005) touches on this, acknowledging that being given the identity of intellectual disabilities can be emotionally painful, and recognizing services remain based around diagnostic criteria, and that emotional support is important in maintaining change (Beart et al., 2004). Given the contextual complexity, it may be a false dichotomy to distinguish between personal and political outcomes. The World Health Organization (WHO) (2002) proposes a biopsychosocial

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model, the ‘International Classification of Functioning, Disability and Health’, identifying three levels of functioning, namely, the body, the whole person and the social context, with disability conceptualized as restriction in any of the three levels. Orford (2008) also developed a three-tier model, based on Bronfenbrenner’s (1979) ecological model, to conceptualize empowerment in relation to the person, group or community. It has been recognized that self-advocacy incorporates achievements on the interpersonal, social and political level (Goodley, 2005). The current study aims to develop the evidence base through the exploration of the experience of self-advocacy group for six people with intellectual disabilities, with a particular focus on the self, the group and the wider community and their interrelationship. At the time of the study, and completely independently of it, the self-advocacy group at the centre, having been in existence for 5 years, was moving from an independent group, facilitated by a voluntary organization, to a service-based group, linked to the local partnership board and establishing a learning disability parliament. The disabling effects of society can include the ways in which participants are involved in research, therefore during the current study thought was given to involving participants in the research design with the aim of contributing in a manner that illustrates the significance of the voice of disabled people (Goodley and Armstrong, 2001). Buchanan and Walmsley (2006) recognize there could be a view that only self-advocates themselves should write about their experiences; however, this perspective should be balanced by the recognition that other researchers have constructively contributed to the understanding of self-advocacy processes and, in doing so, have highlighted personal accounts, leading to a wider understanding of how people with intellectual disabilities see their world, experience powerlessness and exhibit resilience. In research alongside people with intellectual disabilities, it is important to create a relaxed atmosphere and balance the disempowered roles individuals often play (Duckett and Fryer, 1998). Research into self-advocacy should be planned in a manner to ‘incorporate those self-empowering actions that already exist’ (Goodley, 2000: 195).

Materials and methods Participants Goodley and Armstrong (2001) recommend both that time is taken to build research relationships and the use of accessible information to enable informed consent. The first stage of the current study was consultation with the self-advocacy group as a whole. The group had been established for over 5 years, under the umbrella of a national charity, and facilitated by the same worker throughout. The group met monthly and had been involved in activities including consultation, information sharing and making a film. The group had approximately 25 members, living in a variety of settings. The first author met with the group, explained why she was interested in carrying out the research and provided easy read information. Some of the group members had previously been involved in research and, as a consequence of their previous experiences, they suggested that participants should be able to bring a supporter of their choice to any of the researchrelated meetings. The group spoke about how some individuals would feel comfortable speaking in groups whilst others would prefer to speak on their own. The first author revisited the selfadvocacy group, as the research progressed to discuss the research design, which included the previous suggestions, and plans for consultation at every stage of the process. As a result of this discussion, it was agreed that group facilitator would be present in the group interviews and that they would be held at the same place and time, just an alternative week, to the self-advocacy group.

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Six adults, three men and three women, aged between 36 and 70, volunteered to take part in the study. Two participants also had physical disabilities. The participants lived in a range of settings, from independent tenancy to residential care homes. The inclusion criteria were involvement in the self-advocacy group for at least 6 months, capable of giving consent and able to give verbal responses. All participants had been involved in the self-advocacy group for over a year and some since its beginning. The participants were of White British origin.

Interviews The research was designed with collaboration at its heart. The resultant design, which included each participant taking part in two group and two individual interviews, allowed for the possibility that, even with the same researcher, questions and participants, there may be different responses in different contexts (Helitzer-Allen et al., 1994). Prior to the first group interview, the first author developed a semi-structured interview schedule in collaboration with two consultant clinical psychologists and a speech and language therapist, all of whom had extensive experience of working with people with intellectual disabilities. An interview schedule leaves the researcher free to concentrate on the discussion (Smith and Osborn, 2008) and ensures the same topics are covered in all interviews (Radnor, 1994). The questions explored important dimensions of the group, incorporating questions on aspects previously suggested to be part of a self-advocacy experience such as self-development, self-determination and self-esteem, which were drawn from a number of sources (Coopersmith, 1967; Koren et al., 1992; Payne and Jahoda, 2004; Rogers et al., 1997; Wehmeyer, 1995). It has been established that questions should be asked in a way that makes sense to participants (Cardone, 1999), particularly when research involves people with intellectual disabilities (Walmsley, 2001). The questions were therefore designed to be a balance of open-ended and concrete questions, with the capacity to provide as much feedback as possible (Macdonald et al., 2003). The speech and language therapist developed short social stories to aid participants, understanding of abstract concepts, such as roles in a group, and recommended the use of verbal cues to anchor questions, and answers, back to direct experience. The research process was structured so that each participant would be involved in an initial group interview, two individual interviews and a final group interview. This process was explained at the start of the first group. An easy read information leaflet had previously been sent to participants and was reviewed again in the group and informed consent sought. The consent form was in easy read format and explained that participants could withdraw consent at any point. The first author established that an interview schedule would be used during the group, then the same interview schedule would be used for the first individual interview and that she would be seeking feedback on the questions at the end of the group. The initial group interview therefore had the dual purpose of data collection and research design consultation, allowing consultation directly with the research participants. Time was taken to build a positive research relationship, an approach informed by the work of Booth and Booth (1994) who cited that acquiescence is often a feature of poor relationships rather than the innate characteristics of people with intellectual disabilities. The schedule provided a guide to the interview but was used in a flexible manner to ensure the exploration of participants’ responses, with reference back to the schedule when necessary. Further probe questions were used where appropriate.

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At the end of the first group interview, it was agreed that individual interviews would be held in participants’ homes. The group interview data were analysed prior to the individual interviews to identify potential individual differences and areas to follow-up. The interview schedule was used to guide the first individual interview. Following the first individual interview, the data were analysed, and an easy read summary of themes completed for each individual participant, therefore allowing the second individual interview to be used to feedback, clarify and expand themes. The data from the second individual interviews were included in the analytical process. Finally, at the second group interview, the results of the analysis were shared, comments invited and the discussion included in the ongoing analytical process. The final results were shared with all participants in an easy read format. All interviews were taped, transcribed verbatim and ranged from 50 to 90 min. Each person, including the group facilitator, was assigned a pseudonym.

Ethical issues Formal ethical approval was obtained from the University of Exeter Ethics Committee.

Analysis The data were analysed using thematic analysis, which facilitates the identification of patterns in data and allows the determination of themes in a number of ways (Braun and Clarke, 2006). Analysis involved a recursive process of movement back and forth across the data. Initially, notes of any unit of interest were made in the margin of the transcript. Sheets of paper were used to log concepts as they emerged. Statements or notes were then grouped to develop an initial conceptual framework, which was applied to the raw data and refined. Ritchie et al. (2003) model was utilized, which referred to this process as indexing because of the changeable nature of the categories. If new themes emerged they were tested against previous transcripts (Smith, 1995). The research explored the individual experience of a self-advocacy group, therefore a participant-based analysis, which identified the contributions of separate participants across the different contexts, was used. The research was designed to incorporate respondent validation as part of the error reduction process (May and Pope, 2000). At the second individual interview, each person’s individual themes were discussed with them, which allowed the opportunity for a validity check of those themes (Hycner, 1985). Minor corrections were made, which indicated participants felt empowered to offer constructive feedback. The process of sharing the analysis was repeated in the second group interview. The research was designed to ensure transcript analysis was credible and valid, through member checking, on a group and individual basis. Additional checks were conducted with colleagues who formed a qualitative research method peer support group. This provided the opportunity to cross code extracts from the data and discuss the identification of themes. The discussion underlined the interaction of power, voice and emotion. Each stage of the analytic process, from initial coding through to final written account, was reviewed by two research supervisors.

Findings Four themes emerged from the data, namely, being part of the group, self-development, selfdetermination and empowerment. Being in the group provides the context for related experiences, therefore it is represented in a central position (Figure 1).

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Figure 1. Diagrammatic representation of themes.

Being part of the group Participants’ narratives include a range of experiences around joining the group. Jerry, Claire, Jim and Liz joined at staff’s suggestion. Liz wished she had known about it earlier. Claire joined to learn, whilst Neil joined because it had been suggested by friends. Neil and Claire talk about feeling shy at first. Several people describe a sense of curiosity. I wanted to go and see what was going to really happen. (May: 35–6) it is nerve wracking if you don’t know anybody. Once you get used to it, you know what the group’s like, it’s not bad. (Neil: 349–50) I was a bit shy at first, but after a while I think I got used to it. (Claire: 7)

Enjoyment, having something to do, and meeting people were mentioned by every participant. I just go there and enjoy it. Then you are meeting everybody, different homes, like these places. You are meeting everybody from different places or somewhere parents keep their own. (Jim:124–7)

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mixing with different company for a start. When you’re on your own all the time you are in your own atmosphere. (May: 884–6)

Jim, May and Neil mention the importance of Sally (the group facilitator): she runs it well. She’s good at it. I think if there was any argument at all she would dig in fast. I never told her that one, but I do know. (Jim: 188–190) I would not speak to half of those people, if it was not for Sally. (May: 516) Sally does a good job though, if you don’t mind me saying so. Encourages us to do different things. (Neil: 1066–9)

The experience of being part of the group includes group-related challenges for Liz, Claire, Jim and May: the odd person shouting when I am in the middle of saying something. And that certain people don’t put their hand up. (Liz: 205–6) you want to say something she butts into the conversation, and I’ve lost it completely. (May: 352)

Jerry identifies a difficulty with some guests: I find some of them are a bit patronizing. (Jerry: 32–3)

Whilst for Jim the challenge is: I get very emotional. (Jim: 216)

Jim and Neil mention issues of privacy: We do not pry into each other’s business that much because it is not right. (Neil: 427)

Whilst for Jerry the challenge is: some people worry that they might say too much . . . like myself. (Jerry: 104–5)

Self-development A clear theme emerges around the concept of growth and development. The group offers the chance to learn. For Claire, learning involves very specific skills: to help to do something . . . to learn to say no. (Claire: 11–15)

Jerry discusses learning: how people listen and talk about things you know. It is quite interesting. It is interesting listening to other people’s feelings. (Jerry: 119–20)

The group provides the opportunity to learn about different services: we have talked about different residential homes and how people treat you. (Neil: 189–90)

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Jim spoke about learning from others, and his sense of responsibility to help others learn: I don’t like getting up, but you feel you’ve got to do it, because then the others there, who would do the same as what I am doing. (Jim: 199–200)

May associates learning and change with the group. She discusses learning from other members and Sally: you learn a lot more from other people, as well as yourself. (May: 60)

Neil spoke about how people could learn from each other’s experience: If we have a problem. If we are discussing say bullying, say, for example, we could probably go back to the past time, when somebody has been a bully, or somebody has been bullied by someone. (Neil: 80–3)

Several participants talk positively about the range of subjects discussed in the group. For Neil, the subjects feel relevant: I liked it, and they discussed relevant things. It is quite good things what they talk about. (Neil: 144)

Claire identifies subjects important to her: talk about what we want in the future. (Claire: 142) talk about in the community. (Claire: 152)

However Jim’s comments indicate that some areas might not feel relevant to all members: they talk about houses, living outside, the outside world. (Jim: 437)

The activities are mentioned a great deal, both in terms of specific group activities: I did enjoy that film day. (Jerry: 143) we go to, you know, these meeting things that Sally takes us to. I think we all enjoy it (Jim: 85–6)

and those that people became aware of through the group: we get to hear the person who’s doing it explain what it is before we put our name down. (Liz: 283–5)

May, Claire and Neil associate personal change with the group: I think I have understood people a lot more as well, not been as intolerant as I used to be. (Neil: 502–3) That’s only because the meetings have been going on that’s pushed me out a bit more. (May: 214)

The process of change took a long time for May and only started when she followed the advice of a group member. Claire speaks about change that continues outside of the group: if you get stuck you can tell people. (Claire: 253)

Several people mention increased confidence:

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I’ve got more confidence to speak to other people. (May: 263)

However change is not relevant for Jerry: I have seen a lot of things. I don’t want to change. (Jerry: 308–9)

Self-determination The group offers an environment where individuals can ask questions and voice opinions: the sort of place you could go and say. cos they always ask the questions about the subjects that come up. (Liz: 27–8) you can say what you want. (Jim: 440) you can talk about things there what you can’t talk about in residential homes. (Neil: 175–76) to listen, and to give my honest and experienced opinion. (Jerry: 269–70)

Asking questions and speaking up is not a theme for Claire, and May identifies some difficulty with this aspect: it’s just that, I don’t always like giving it out. (May: 486)

A narrative present in a number of participants’ responses relates to a sense of frustration about whether social care staff are doing their job: you get people what comes in up there, to do a job, and they ain’t doing their job. That gets me half the time, because I mean they’re there, and getting paid for it. (Jim: 168–9)

The group provides an opportunity to address this: the ones that don’t know what they are doing . . . you get a chance to ask them questions. (Neil: 708–9)

Interestingly participants’ responses include narratives around the impact of policy change and concerns about future changes: You were put in homes for all your life, the government has to push you out. (Jim: 405) you can guarantee that ld and physically handicapped are always shut down, you know what I mean. Say, for example, social services decide to have a pay rise, or cut back services, they will cut back services every time. (Neil: 760–5)

One participant, Neil, is interested in the possibility of people who use services setting up and managing their own services. He also has concerns about the power to be heard within the Learning Disability (LD) Parliament structure: what I am a bit cynical is that we have no real influence like a proper MP would you know. We might have a say, but it does not mean these institutions or departments have to listen to us. (Neil: 568–70)

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Empowerment Participants’ interest in challenging others varies, it is not part of the narrative of three of the participants, but for some it is part of the experience: I like to be an agitator. (Jerry: 283)

Liz states she is: not shy to say what the problems are. (Liz: 125)

For May, there exists a wider narrative of disempowerment: I was always thinking I was a burden because I could not walk. (May: 142)

Being able to support others is an important factor. The self-advocacy group is a place where you can take problems, feel supported and offer support: although I can’t see I enjoyed helping. (Jerry: 146–7) you never know what you may be able to do for somebody else. (May: 35–7) sometimes it is good to let rip in a meeting, in a neutral area really. (Neil: 265–7)

The alteration of the group’s structure is mentioned a great deal. The new structure includes no funding for travel costs and smaller more localized groups. Participants’ responses reflect narratives of uncertainty about what it might mean and concern for other group members: some people with ld, they don’t like change do they. . . . . sometimes I can cope with change and sometimes I can’t, to be honest with you. (Neil: 106–7) one group may not bring out what they want to do, but when you are with all the group a lot of people can think oh I wonder what we can do with our group. (May: 162–164).

Every participant mentions times of feeling powerless or even frightened. Many speak about being ‘dumped’ either into or out of care: I thought to myself where the hell am I going to be dumped to next. (May: 10)

There was fear of speaking up: I was feeling a bit scared to ask . . . They might shout at me. (Claire: 303–4)

Several people talk about previous negative care experiences, and Jerry describes an experience of being abused: they said I was lying . . . I did not blame the chap himself, I blamed the staff who were there who should have known. (Jerry: 433–4)

There is a fear of professionals: I just call them high knobs. They do come but they don’t see me. (Jim: 478)

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If I saw a social worker walking in here to see me, I would not be in this room. (May: p. 445)

Several people speak about fear of change: I mean if they come and ask me well I would be lost. Cos you are not going nowhere if you go out there, things will change out there, because people know you’re from a home. (Jim: p. 86–7)

Discussion This study reflects the dynamic and individual nature of outcomes and challenges in the experiences of self-advocacy, which in turn touches on the dual aspect of self-advocacy, the personal and the political. The participants’ narratives offer similarities and differences. The similarities indicate that everyone enjoys the group and meeting people. All joined at the suggestion of others, usually staff. May remembers an initial sense of curiosity, whilst Neil and Claire recall feeling shy. Differences often connect to the roles participants take in the group, which in turn links to their sense of self. For Liz, Jerry and Neil being able to speak up and challenge is part of their enjoyment. The data establish the importance of Sally to Jim, May and Neil. There is evidence of change for some people. May, Claire and Neil associate a lot of personal change with being part of the group and speak about their increased confidence. Jim, May, Claire, Jerry and Neil mention learning from others, Jim talked about his responsibility for teaching others, and Liz spoke of being able to ask questions. Neil, Jim, Liz and May liked to hear about other people’s experiences of care; however, Jim is clear he does not want to speak about his own. Overall the research generated outcomes and challenges in relation to the individual experience, the group context and the wider environment. Each of these areas will be considered.

Individual This section will explore the aspects of the individual experience of being part of a self-advocacy group. The narratives identify enjoyment; indeed, the main reason for attending self-advocacy groups is often friendship (Goodley and Armstrong, 2001). There exists an interrelationship between social interaction and self-development. Self-advocacy groups are a context where individuals can find out about other people’s lives, develop interpersonal relationships, build meaning, explore roles and develop identity (Goodley, 2005). Being in a self-advocacy group offers the factors important for self-development. A group environment can facilitate development of a sense of independence and positive self-image simply through being asked for an opinion (Burke, 2005). The social environment of a self-advocacy group is particularly significant in the more general context of a lack of opportunity to meet with friends in a self-determined manner (Goodley and Armstrong, 2001). Disability is often only a part of an overall sense of self (Puttman, 2005); however, the context of a self-advocacy group allows reflection on broader aspects, such as the ability to offer practical and emotional support to others (Chappell et al., 2001) and to recognize resilience (Goodley, 2000). Meaning making is a social construct born out of social activity, therefore there exists a mutual relationship between the process of finding meaning and developing a sense of self (Pratt and Ashforth, 2003). How we feel about ourselves, our sense of self-worth, is changeable and relates to the ability to achieve tasks or take part in activities that we see as important (Puttman, 2005). In the current study, narratives emerge, which indicate meaning making and development of self-worth in the context of participants’ self-advocacy experience. Indeed self-advocacy offers the

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environment to provide peer support and acknowledge resilience in contrast to the dominant constructions in relation to intellectual disabilities of dependency on others and lack of ability (Goodley and Armstrong, 2001). This was present in some participant’s narratives. More generally, there has been a shift in focus from concepts of vulnerability to understanding resilience and protective mechanisms (Rutter, 1987). Resilience is not a fixed individual attribute, but develops from successful meaningful task accomplishment, and secure and supportive relationships, therefore experiences can effectively create turning points for a person (Rutter, 1987). Each participant’s story contains evidence of resilience, some of which is clearly linked to their self-advocacy experience. May spoke of previous negative care experiences, her worry about being a burden and her use of the group to push herself. Claire spoke of feeling shy and using the group to learn to say no and to tell people when she was stuck, something she took outside of the group. Jerry spoke of the emotional impact of being labelled with intellectual disabilities, then having that label removed, and of being abused in care and no one listening, and how he uses the group to be a bit of an agitator. Jim refers to his sense of fear but his determination to speak up so that others can learn. Lizzie discusses her sense that her mother held her back, but now she is determined that she is more independent to ask questions and give things a try. Neil spoke of the anger he previously felt and how he manages to control this in the group and be able to speak up and ask questions. There exists a complex interrelationship between the political, self-advocacy and identity (Goodley, 2005). Roets and Goodley (2008) acknowledge that self-advocates around the world identify the transformative character of self-advocacy. Learning processes are clearly very much part of the group experience. Participants mention the group providing a place to effectively try out new ways of being (Bion, 1961). Yalom (2005) cited that within groups individuals learn more adaptive ways of being and behaving, which in turn they carry out into other social environments, effectively setting off a process of positive change. This concept emerges in participant’s narratives, particularly Claire’s, where she talks about learning to say no and to ask for help within the group and then being able to do the same in her home environment. In addition, group experiences are unique in offering individuals the opportunity to be of benefit to others, consequently individuals who may consider themselves a burden can find they are important to others (Yalom, 2005). The narrative of feeling a burden and then finding a new sense of self clearly emerged in May’s responses. Participants’ narratives around individual outcomes underline the two key aspects of selfadvocacy, collective action and personal development. In Mitchell’s (1997) research into selfadvocacy and the impact on families’ personal development is the most commonly mentioned achievement. In self-advocacy experiences, people with intellectual disabilities engage with the uncertainty of becoming, sharing their life stories, and recognizing oppression, which in turn generates the rich nature of self-advocacy (Roets and Goodley, 2008). This all occurs within the setting of a group and the next section reviews the group-related factors.

The group environment In the current research, being in the group provides the context for the other themes. Rules and the group facilitator’s role emerge as important group factors, which possibly reflects the need for a sense of safety in the group and the consequences mentioned by participants on their ability to remember what they intended to say if they are interrupted. A sense of psychological safety is central to enabling individuals to step into the uncertainty of extending towards a new sense of self (Pratt and Ashforth, 2003). Group dynamics are complex (Goodley, 2000); however, there is a

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point at which a person’s capabilities and the support available in an environment are congruent (Puttman, 2005). The data raise the suggestion that structure and facilitation are significant factors in a group for people with intellectual disabilities. A group environment allows in-group social comparison, potentially reducing the salience of stigma, recognizing positive characteristics and offering information that may help deal with the effects of stigma (Crocker and Major, 1989). Generally, opportunities for personal development or richer social experiences can lead to a positive sense of self, therefore positive roles such as being a self-advocate can counter stigma (Jahoda and Markova, 2004). Indeed if an individual has a range of attributes and roles that offer sources of feelings of self-worth, they effectively have a buffer against the impact of negative social comparisons (Dagan and Sandhu, 1999). Participants mention learning from others, the responsibility to teach others, recognition of positive change and learning on a variety of levels. It is possible to conceptualize the self-advocacy group as providing an environment conducive to social learning. Group experiences enable members to offer social and emotional support, which allows individuals to experience new ways of thinking and talking (Rappaport, 1995). Vygotsky (1978) postulates learning as a social process, within which peer collaboration and dialogue are crucial. The current study identifies the importance of learning with peers. The best learning occurs when individuals are actively involved in tasks, where knowledge and responsibility are increasingly handed over (Ryle, 1991). In the self-advocacy group, people are encouraged to take on more active and responsible roles as their confidence increases. The self-advocacy group effectively offers a zone of proximal development, ‘the distance between the actual developmental level, as determined by independent problem solving, and the level of potential development, as determined through problem solving under adult guidance, or in collaboration with more capable peers’ (Vygotsky, 1978: 86). Narratives evidence that within the group people feel supported to try new things and comfortable to ask questions. Overall the narrative of self-development appears to relate to experiences as part of the group, whereas the theme of self-determination connects to areas outside of the group, such as the community and how it impacts. For many people with intellectual disabilities, the struggle for power must take place in a context controlled by social care professionals (Dowson, 1997). This is particularly salient in consideration of the external imposed changes to the group structure and context.

Wider environment Empowerment and personal change are overlapping themes in the data. Self-determination exists in a context and is therefore influenced by wider factors, such as change in policy and social care provision. Although responses indicate that within the group there is potential to ask questions and hold people accountable, the overriding impression is of a wider sense of powerlessness. From observation, the participants in this study are the more articulate and assertive members of a selfadvocacy group who volunteered to be part of a research project; however, all describe times when they feel powerless and even scared. The narratives indicate this fear often relates to fear of change or of speaking. Fear of having to move out of current accommodation is a narrative mentioned by several participants, often derived from previous experience. Many of the participants’ narratives include reference to a sense of fear in the community. Participants’ responses suggest that the group context feels to be an environment which to some extent is under members’ control, a place where self-determination and empowerment merge.

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Interestingly, Payne and Jahoda (2004) establish that belief of people with intellectual disabilities in their social ability is distinct from their social ability as rated by others and that higher social self-efficacy scores are associated with higher depressive symptomology, possibly because individuals believe in their ability but have no power. Learned helplessness occurs when it is learnt that outcomes are not controlled by responses (Maier and Seligman, 1976). There is an element of helplessness and powerlessness present in the current research data, suggesting that in the past participants have not felt listened to and feared saying how they felt. Groups offer the chance to address the issue of power head on (Daniel et al., 1988). Several participants mention change as a consequence of being part of the group, including learning to say no, being able to push yourself forward and getting up and speaking. These responses indicate that the group context empowers individuals and for some that sense of empowerment is transferable into other contexts. Several participants demonstrate a level of political awareness and recognize that changes in their lives flow from policy change. Mention is made of the need to fight for care, the limitations of care providers’ responsiveness to individual need and of the profit made by some providers. Narratives suggest a sense of a different level of accountability and power relationship when service providers attend the self-advocacy group, in comparison with other meeting forums. Indeed solidarity and joint action underline the capacity of groups to empower members (Orford, 2008). Participants’ narratives suggest that self-development and empowerment relate strongly to the group context. The impact of the wider world directly on the group is present in participants’ responses concerning the necessity of care staff’s support to initiate and facilitate attendance. There are difficulties inherent in achieving independence psychologically and emotionally when individuals are dependent on caregivers (Ward, 2005). Participants also spoke about the impact of the responses of the wider community on their ability to feel empowered and to develop a sense of self-determination. It is worth noting that although people with intellectual disabilities may be offered choices, they are less likely to be involved in the development of these choices (Brandon, 2005). This is very much the case in relation to the changes in the group, which include movement to smaller more localized groups, effectively breaking up the current group; the ending of payment of travel expenses to attend, effectively increasing reliance on support staff; and the focus moving to involvement in a learning disability parliament. Dearden-Phillips and Fountain’s (2005) review of these parliaments, a partnership between statutory and voluntary organizations and members of parliament (MPs) (people with intellectual disabilities elected by their peers to represent them), concludes that although the MPs voices are integrated into service planning, the power to effect change is questionable. In addition, particularly as the change in the group structure is externally imposed, it is clear that for any group of people who are relatively powerless, the extent to which change can manifest itself is limited by how far society will allow it to happen, which in turn relates to theoretical models of disability.

Models of disability Participant’s narratives include examples of self-determination, self-development and empowerment in the context of the group. For several participants, the change that takes place in the group carries on within their home environment, therefore there are indicators of outcomes for participants in relation to the person, group and in some cases wider community. The social model defines disability as being created by social oppression and exclusion, therefore the main objective is to achieve equality of opportunity through breaking down social barriers, creating positive

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disability identities and integrating fully as equals (Taylor, 2005). However, this view rests on the assumption that society in general is one of equal opportunity, a view many people in society would not share. Indeed a criticism of the social model has been the perceived failure to recognize the full reality of disability (Taylor, 2005). Buchanan and Walmsley (2006) wrote of the optimistic potential for self-advocacy as a transformative movement. From a critical perspective, it has to be questioned where this transformation is located and whether this might be different for different individuals. For many people, the move from a perspective of common disability experience to a disability-related political agenda is a longer process (Puttman, 2005). In the current research, it is clear that for some individuals the group holds a personal focus, they are far less connected to any sense of a political process, and it is questionable whether they ever will be. Mosley (1994) applied Maslow’s (1967) hierarchy of need to group work with the different layers being physiological; emotional and physical safety; love, affection and belonging; self-esteem; and self-actualization. In a truly selfdetermined context, the members of a self-advocacy group should be able to determine which aspect they invest in or is the most relevant for them. The three areas of outcomes identified in this study could be conceptualized in relation to the biopsychosocial model discussed in the introduction (WHO, 2002). For some individuals, their narratives indicate that restriction could be at the level of the body or the whole person. This connects to particular challenges mentioned by participants and the consequential importance of group rules and facilitation in managing the disabling factors. For other participants, the restrictions mentioned speak of the externally imposed group change process, the need for support from care staff and the positioning of people with learning disabilities in relation to service delivery experiences and policy drivers. This would indicate, according to the WHO’s (2002) model, disability existing at the social context level. It is probable that the boundary for restrictions, therefore, disabling factors, reflects not only individual but also contextual factors and the interplay between the two, something the WHO’s (2002) biopsychosocial model can accommodate. It has long been recognized that self-advocacy is about both the personal and the political, effectively one size does not fit all; therefore, it is crucial that the structures that exist around the movement recognize this, with self-advocacy being structured and funded to accommodate both aspects. We have a society that does not operate consistently to support and facilitate an individual’s abilities and natural growth tendencies. Indeed some of the narratives evidence fear of society, policy, service providers and the representatives of society. This is something that should cause a ripple of concern among health and social care professionals. Self-advocacy groups reflect the instability of the voluntary sector and are constantly under threat, both in terms of funding and in relation to self-determination, particularly if funding leads to becoming caught up in professional discourses (Goodley and Armstrong, 2001). Buchanan and Walmsley (2006) cite the political emphasis on the development of a voice for the collective, mainly through partnership boards, which in turn could lead to a danger of tokenism. It is also questionable whether this process is what people with intellectual disabilities want, if not then the only conclusion can be that this development is part of a disabling environment. In the absence of a rich evidence base, government funding for self-advocacy could define outcomes (Buchanan and Walmsley, 2006); therefore, research into self-advocacy should be used to inform wider commissioning processes, otherwise they will risk undermining existing resilient forms of selfadvocacy (Goodley, 2005). Service user movements combine self-help, support and political change because there exists a strong belief that people need support to be able to participate (Beresford and Campbell, 1994).

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The need for secure funding, education and a broader area of influence is identified on an international level (Caldwell et al., 2012). Organizations need to ensure procedures mitigate against barriers to effective participation (Brandon, 2005) and the actions of government departments should be assessed as to whether they create or remove barriers to inclusion or enhance quality of life (Davis, 2010; The Future Vision Coalition, 2008). Equal treatment is not the same as equal citizenship because different people require different approaches to achieve the same capacity for participation (Stainton, 2005).

Practice implications The current study illustrates how the self-advocacy group is a place where individuals can express and develop a sense of self; however, the externally imposed change speaks of that environment being under threat from the same processes currently threatening wider service and support networks. This study contributes to the development of the evidence base in relation to the potential outcomes of self-advocacy experiences for people with intellectual disabilities, which in turn should feed into commissioning and funding processes. The narratives of the participants in this study clearly indicate the need to hold in mind the potential level of powerlessness experienced by individuals with intellectual disabilities, even those who present in a confident manner. Research is needed to develop the evidence base in relation the interrelationship between the specific factors in a self-advocacy experience and outcomes across a broader range of people who use services. Additionally, research is required into the factors that offer well-being, self-development and self-determination outcomes for people with intellectual disabilities. The findings could then be carried forward into training and monitoring quality standards in health and social care provision.

Limitation of the study The current study aims to explore the experience of a self-advocacy group for six participants with intellectual disabilities to identify outcomes; therefore, the analysis of themes is relevant only to this group of people. The study captures a sense of a moment in time when the group is in transition. It would be useful to have research that is able to track the impact of change in self-advocacy structures and provision. The research process is also limited by the range of questions used. In addition, the study is limited because it explores the experience of the people who volunteered to take part and who are capable of responding verbally; however, further studies with different groups of participants are required before generalizations can be made (Smith and Osborn, 2003). Finally, on the broadest level it should be acknowledged that research may aim to contribute to improving people’s lives, but the capacity to bring about change is not in the hands of the researcher (Telford and Faulkner, 2004).

Conclusion The current research explores a self-advocacy experience for people with intellectual disabilities to identify outcomes and benefits, effectively ‘what’s in it for me’. The themes emerging from the data are grouped under four broad headings, namely, being in the group, self-development, selfdetermination and empowerment. Outcomes and challenges are identified in a range of areas,

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and consideration is given to the integration of these findings with models of disability, practice implications and areas for future research. The process of self-advocacy is contextual, dynamic and individual, reflecting the person and their history, abilities and interests. For some having a voice and advocating involves learning to say no, whilst for others it includes working to hold service providers to account – effectively what’s in it for me is individualized and incorporates both personal and political outcomes. The importance of having a voice is reflective of who is listening and the spaces to use it. Members of the group predominately listen to each other supported by the group rules; listening contexts outside the group are changeable and less open to clear definition. Acknowledgements The self-advocacy group, the six participants and Sally – without you absolutely none of this would have been possible, and with you it was an exciting, interesting and positive journey. Thanks also to Niki Buckingham, Kay Hughes, Emma Cooper, and Rachel Baron.

Funding This work is completed as part of requirement of the Doctorate of Clinical and Community Psychology, University of Exeter, UK.

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