Supporting People With Learning Difficulties In Self-Advocacy Groups and Models of Disability

Health and Social Care in the Community 6(6), 438–446 Supporting people with learning difficulties in self-advocacy groups and models of disability Dan Goodley BSc (Hons) Psychology Discourse Unit, Department of Psychology, Faculty of Arts, Science & Education, Bolton Institute Deane Road, Bolton, UK Correspondence Abstract Dan Goodley Discourse Unit Department of Psychology Faculty of Arts, Science & Education Bolton Institute Deane Road Bolton BL3 5AB UK This paper addresses the support offered by ÔadvisorsÕ to people with learning difficulties in self-advocacy groups. Previous literature has failed to account for the multifaceted nature of self-advocacy support. This failure has resulted in simplistic and unfair attacks on professional (staff) supporters; a lack of conceptualizations of ÔsupportÕ which are grounded in the empowering discourse of the social model of disability; and ignored the self-determination of self-advocates with learning difficulties themselves. I will present vignettes of support (ÔinterventionsÕ) offered by advisors that I observed, which were empowering and disempowering, drawing on an ethnographic study of four self-advocacy groups. These interventions can be best understood as either reflecting a social model or an individual model of disability. Three pairs of intervention are presented reflecting the social-individual dichotomy. With reference to disability theory it is argued that those acts which reflect a social model offer a more authentic means of promoting the self-advocacy skills of people with learning difficulties. Finally, the intra-support networks of self-advocates are exemplified, suggesting that any support offered by professionals or advisors needs to be sensitive to the interventions of people with learning difficulties themselves. This paper concludes by offering practical pointers to policy-makers, service providers and others working with people with learning difficulties. Keywords: learning difficulties, self-advocacy, models, disability, support Accepted for publication 21 November 1997 Introduction The growth of the self-advocacy movement in England has potentially massive implications for people with learning difficulties (Williams & Shoultz 1982). Contemporary demands for innovative methods of Ôuser participationÕ have intensified professional and policy-maker interest in self-advocacy as a potential context for empowerment in action (Barnes & Wistow 1992). This interest has resulted in the growth of a diverse assemblage of self-advocacy groups (Crawley 1988, Simons 1992). Previous appraisals of self-advocacy have tended to focus on the constitutional and structural facets of 438 groups. CrawleyÕs (1990) typology of groups, for example, has shone light on the diverse nature of the movement. First, groups may be politically, financially and organizationally ÔautonomousÕ (such as the People First organization). Secondly, they may be ÔdivisionalÕ in that they have developed out of existing parental or professionally led organizations (e.g. MENCAP). Thirdly, a Ôcoalition modelÕ may be adopted by affiliation with wider (disability) civil rights organizations (e.g. Independent Living Organization). Finally, groups may be Ôservice-basedÕ where self-advocacy workshops constitute part of the curriculum of an adult training or social education centre (see CrawleyÕs 1988 study of trainee committees). Many self-advocates and © 1998 Blackwell Science Ltd Supporting people with learning difficulties advisors have expressed concerns over recent developments within the movement (Tyne 1994, George 1995). Consequently we cannot assume that an increase in the number of groups directly relates to an increase in tangible and meaningful opportunities for self-advocacy and self-determination (Crawley 1988, p. 47). The various positions of advisors, involved with promoting the independence of group members, further problematizes the nature of self-advocacy (Worrel 1987, 1988, Dowson & Whittaker 1993). In particular, staff supporters have been attacked on the grounds that their professional accreditation, or the professionalized structures that they work within, inevitably stifle the development of self-advocacy within groups (Hanna 1978, Clare 1990). A recent paper (Goodley 1997) and my ongoing ethnographic research with four self-advocacy groups suggest that these appraisals of advisorsÕ support are problematic in three ways: ● ● ● To assert that staff advisorsÕ support is inevitably limited by their professional status does a disservice to the individuals who hold these posts. This analysis is static and conservative. It not only holds that structure basically positions people to behave in certain ways (staff role Ð bad advising), but that resistance to exclusive or oppressive structures is impossible (staff advisors are only part of the paternalistic control of people with learning difficulties). Resilience of self-advocates in the face of adversity is ignored. It assumes that a particular type of advisor will result in a particular type of self-advocacy and people with learning difficulties benefit or suffer accordingly. Yet what of the input by selfadvocates? In this paper these three problems will be discussed in the following ways. First, rather than considering the advisorÕs role as a direct reflection of a particular ÔtypeÕ (e.g. staff advisor), I will illustrate how advisors are open to different types of actions or interventions in self-advocacy groups. Secondly, interventions of the advisors I observed were fluid, ever-changing and complex. One way of trying to draw together what these interventions mean for self-advocacy is to analyse how they reflect different understandings (and therefore actions) of disability. Therefore I will consider the Ôintent of an interventionÕ (Dowson & Whittaker 1993, p. 31) in terms of the discourses or practices (Fairclough 1989) they might reflect, associated with two models of disability Ð the individual and social models (Barnes 1990, Oliver 1990, 1996, Morris 1996). Finally, advisorsÕ actions will not be considered alone. I will refer to some actions of self-advocates, which often occurred regardless of advisor interventions, and which augmented the development of selfadvocacy. I will focus on actions that encouraged the progression of self-advocacy and reflect discourses of self-help, collective identity and social action (aspects of the social model). The impact of these actions on the Ôdoing of self-advocacyÕ was as important as the actions of advisors. Conceptualizing support: interventions and discourses of disability Over 14 months I had ethnographic involvement with four self-advocacy groups1. Groups varied with respect to where they were based (in their own offices, meetings in pubs, in an adult training centre), the status of advisors (unpaid volunteers; paid independent staff; centre staff offering support in their spare time or as part of their daily work) and their structure (independent group offered as an alternative to local centres; Ôsocial clubsÕ; centre users Ôworking groupÕ representing peers concerns). A total of 85 h contact-time, sitting in groups, was obtained with the four groups giving rise to much ethnographic material (recorded in a field-work diary after meetings). Access was gained using accessible leaflets (suitable for non readers) and various projects were assigned to me by groups (e.g. presenting group constitution; producing a leaflet on voting; writing an evaluation report for fund-holders). Early on, I realized that support offered by advisors could be viewed as both facilitative and restrictive. Support was ever-changing and open to re-appraisal. I pulled together similar vignettes of advisorsÕ support under types of ÔinterventionÕ. Understanding support as ÔinterventionsÕ The idea of ÔinterventionÕ has been discussed by Dowson & Whittaker (1993, pp. 31Ð32) who identify six categories of action which may be employed by the advisor: ● ● ● ● ● ● prescriptive interventions Ð aim to give advice, recommend a behaviour or course of action; informative interventions Ð aim to give knowledge or information; confronting intervention Ð to challenge attitudes, beliefs or behaviours; cathartic interventions Ð provoke a release of tension; catalytic interventions Ð elicit information or opinion; supportive interventions Ð affirm the value or worth of the group. © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 439 D. Goodley Building on this analysis my framework employs the notion of discourse or practice, reflecting recent developments in emancipatory disability theory and research. Interventions as a reflection of discourse Discourses of disability in the late 20th Century inform our understandings of what causes learning difficulties, how it is experienced, through to the ways in which it is acted upon. To understand disability in terms of ÔdiscourseÕ ties together notions of cause, experience and action (Skrtic 1995). According to Fairclough (1989) discourses are social phenomena in the sense that whenever people speak, listen, write, read or act, they do so in ways which are determined socially and have social impacts. Moreover, there exists a relationship between social events (interactions) and more durable social structures that shape and are shaped by these events. In this sense, then, discourses and practices are inseparable; both refer to either what people are doing on a particular occasion, or what people habitually do given a certain sort of occasion. That is, both can refer to either (linguistic) action, or convention: The social nature of discourse and practice always implies social conventions Ð any discourse or practice implies social conventional types of discourse or practice É people are enabled through being constrained: they are able to act on condition that they act within the constraints of types of practice Ð or of discourse. However, this makes social practice sound more rigid than it is, É being socially constrained does not preclude being creative (Fairclough 1989, p. 28). This last sentence links into an important point about discourse and practice, that where there is power there is also resistance (Foucault 1975). This notion of resistance to oppressive discourses recognizes a key issue associated with power. We are not simply empty vessels receiving powerfulness or powerlessness. More than that, we reproduce power in various ways, with good or bad effects upon ourselves and others. Oliver (1996, p. 144) points out that, Understanding societal responses to long-term disability is no simple task and requires us to analyse ourselves and the discourses we use in order to talk about out world. Taking advisor conversations and interactions within groups, I examined how they reflected and reproduced discourses of disability. Advisors are open to reversing, changing, moving, building upon and rejecting all together, ways of seeing and acting. Throughout my ethnography it was as if ÔgoodÕ and ÔbadÕ interventions were available to advisors, just as different discourses float above and between us, mean440 ings slipping and sliding (Howe 1994, p. 522). As far as I was concerned, there were no ÔgoodÕ or ÔbadÕ advisors. If anything, there were some who appeared to be more prone to act upon discourses that assumed individual pathology, whilst others seemed more able to clearly link practice with assumptions of competence. As Skrtic (1995, p. 42) notes, the disciplinary power of these discourses can lead professionals, unconsciously or unintentionally, to operate under the taken-forgranted contentions and customs of their Ôknowledge traditionÕ. This can have the effect of them turning others into subjects for investigation, surveillance, treatment and exclusion. Conversely, other discourses can be embraced which inform more empowering practice. So what are these discourses? Discourses of disability: the individual and social models Over the last century through to the present day, learning difficulties, and disability in general, have largely been understood in terms of individual impairment. Consequently, impairment whether it be physical, or of ÔmindÕ, is perceived as creating disability. Placing impairment and disability in such a causal relation individualizes the concept of disability. For each individual with learning difficulties, then, their disabilities are the result of their own individual impairments. This understanding of learning difficulties (and disability in general) embraces what has been called the individual model of disability or Personal Tragedy Perspective (Oliver 1990). Discourses originating from the individual model locate disability within the individual, and his/her impairment. Further discourses, and practices, emerge; of personal pathology, of individual difficulties and of dependency in the face of care. Moreover, people so-labelled are required to (and need to) adjust to their environments, be the recipient of medical/professional expertise and dominance, and are the focus of policy that at best intervenes and at worse controls (see Oliver 1996). By placing disability resolutely in the realms of personal tragedy, the individual model perpetuates a culture of dependency and non acceptance. As with most dominant discourses, it is hard for people to break through and away from the concept of learning difficulties as individual pathology. Consequently, those that step out of this socially prescribed role flout the rules, challenge dominant hegemony, and threaten the very foundations of societyÕs understanding of disability. When people with learning difficulties step out of the passive role assigned by society, and take up the active role of selfadvocate, the resulting drama is unfamiliar. When supporters and advisors employ an individual model © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 Supporting people with learning difficulties of disability, this is at odds with facilitating the selfdetermination of self-advocates (Goodley 1997). In opposition to the dominant individual perspective, the social model of disability considers the ways society disables (see for example Barnes 1990, Oliver 1990, Morris 1991, 1996, Swain et al. 1993). Although a person may be impaired this does not determine their disabled role in society. To find the dominant origins of disability we are encouraged to turn attention away from the individual onto a society that excludes, discriminates and stigmatizes people with impairments. Disabled people are just that, people disabled by a social, economic, cultural and political contemporary climate: If there is one firm conclusion to be made É it is that É mental retardation is as much or more a social and cultural phenomenon as it is a medical Ð genetic or cognitive Ð psychological one É . The definition of retardation, then, and some of the consequences of being thus labelled are concomitants of social life (Levine & Langness 1986, p. 191, my italics). The application of the social model of disability permits a different way of conceptualizing and practising self-advocacy. The discourses and practices of the social model address notions of social problems, of societal/environmental barriers and of independence through self-advocacy. Moreover, there are demands for societal adjustment and calls for individual and collective responsibility of all societal members to redress disabling environments (see Oliver 1996). Now when people with learning difficulties step out of the passive role assigned by society, and take up the active role of self-advocate, this feeds into the political aims of the social model. Instead of an understanding of learning difficulties as individual inadequacy there now exists a model that embraces individual and collective empowerment. The focus is shifted away from what people cannot do to what people can do. The role of the advisor, grounded in the social model, is explicitly associated with promoting the self-determination of self-advocates (Goodley 1997). With these assumptions in mind I delve deeper into the link between discourse or practices and support offered by advisors. Inclusive and exclusive support: social and individual models of intervention As Lukes (1974) recognizes, often we are not consciously aware of the ways in which we (dis)empower others. Grounding analyses in discourses of disability provides a framework for uncovering the meaning and affects of interventions. Consciousness can therefore be raised by calling upon three pairs of interventions that reflect the individual-social model dichotomy. ÔProfessionalizingÕ (acting like staff) versus ÔbolsteringÕ (acting together) Professionalizing interventions can be seen as discourse and practices of the individual model of disability. Typically the advisor responds to a request from a selfadvocate with, ÔIÕll have a chat with someone on your behalfÕ or, ÔWeÕll have a chat just you and meÕ: Jim lives in a group home and is very unhappy with his bed, ÔIt is too narrowÕ. One of the supporters, a manager of one of the nearby Adult Training Centres, told Jim, ÔThatÕs being sorted out for youÕ. Karen mentioned that she was worried about her Ôsick noteÕ that she needs to collect her benefits. One of the supporters, who happens to be KarenÕs keyworker, told her, ÔSomeoneÕs sorting you out with thatÕ. Here self-advocacy is individualized in terms of staff and client power relationship making it difficult for the selfadvocate alone to challenge the supporter if their interventions are inadequate. Issues and concerns that others may share, or may later have to deal with, are not made public within the group. Instead there is fragmentation into Ôworking pairsÕ. The group does not collectively deal with a memberÕs concerns but the professional exerts, and hence reaffirms, expert intervention and a culture of paternalism (Khan 1985). In this culture, the person asking for support may feel intimidated and those benefiting are primarily the advisors. As Dowson & Whittaker (1993, p. 14) observe: It flatters our ego to feel we are needed, it is often so much easier and quicker to do things ourselves. Professional intervention can also dissuade self-advocate criticism of (fellow) professionals. Examples of this are typified by the advisor reacting to criticisms of professionals with a, ÔWell, theyÕre doing their bestÕ response. Bachrach & Baratz (1970, p. 6) cited in Lukes (1974) observe that power may be, and often is, exercised by confirming the scope of decision making to relatively ÔsafeÕ issues: The group were talking about their key-workers, Karen said that she was unhappy with herÕs, ÔHeÕs never there, I donÕt know why he bothersÕ. A supporter reminded Karen that keyworkers work shifts. Karen later went on to say her keyworker was like, Ôa guardian angelÕ. No attempt is made by the supporter to discover whether or not Karen has good reason for being unhappy with the absence of her keyworker. It is assumed that the keyworkerÕs presence is only dependent on shift-work (competency stifled by structure). Moreover, the implication is that Karen fails to understand the shift-work professionals undertake (KarenÕs incompetence). The ÔnecessityÕ of individual treatment © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 441 D. Goodley by professionals (see Barnes 1990), no matter how bad it is, is conveyed and calls for social action suggested by the social model are rejected: I had been asked by the group to write up and illustrate a leaflet introducing their group. Cliff had asked me to write, ÔSome of our supervisors are treating us badlyÕ. Presenting the leaflet at the next meeting Cliff gave me a thumbs up for putting his comments down. Two advisors apparently seemed to take a different perspective, ÔThat bit about the supervisors sounds awfulÕ said June. The other, Virginia, put her head in her hands. Whether or not CliffÕs comments Ôsound awfulÕ is not the point here Ð they are after all his opinions. In defence of the advisors, they did not suggest that the comments be discarded, but, if such concerns are shared by advisors, can self-advocates feel comfortable in criticizing staff and in turn build a collective identity intertwined with dissent? (Shakespeare 1993, Campbell & Oliver 1996). At worst an atmosphere of untouchable Ôexpert authorityÕ is bred, and staff ineptitude is indirectly justified by being ignored. Instead, there seems to be this convention that staff should be praised not criticized. As Lindow (1993, p. 185) argues there are still too many people who accept paternalistic services and are grateful to be noticed at all. We can let them know that they deserve better. In accordance with this I observed more positive professional-client actions by advisors. These ÔbolsteringÕ interventions are characterised by ÔweÕll sort that out together laterÕ answers to requests. Two vignettes highlight this: Dorothy is sick of people pushing in front of her in the dinner queue. The advisor suggests that theyÕll, ÔHave a chat with the staff on dinner dutyÕ. Denise was interested in the story of a couple with learning difficulties who had bought their own house. ÔIÕd love to do thatÕ she told the group. The advisor said they could talk about this at DeniseÕs Individual Programme Plan. The support that one self-advocate receives may be passed on to peers, linking into the interdependent aspect of the social model (Oliver 1996). There may be, after all, only so much time for dealing with individual concerns in a group setting and action can be taken far more quickly on a one-to-one basis. Also, people may not want to talk in front of a larger group, preferring a one-to-one, although later they may gain confidence to do so. In parallel with this, advisors themselves may learn how to support self-advocates through these Ôworking pairsÕ and eventually translate this to the larger group (an important skill identified by self-advocates, see Dowson & Whittaker 1993, p. 10). Also taking place is self-advocacy in Individual Programme Plans (an intrinsic part of self-determination for Sutcliffe & Simons 1993). The dynamics of this intervention can go further with advisors supporting self-advocate criti442 cism of (fellow) professionals. This was evident, perhaps surprisingly, in a centre-based group I sat-in: Lesley is sick of a certain member of staff picking on her. Louise, the advisor, suggested she go see the manager and put in a complaint. She would go with her if Lesley so wished. Individual advocacy relationships need not take on a conservative character. Instead, they may challenge traditional practice in a radical way. Just because Louise is a member of staff does not mean that she is inevitably inept. Any advisor can hold prejudiced or emancipatory understandings of disability which threaten or encourage the development of self-advocacy. ÔDeficitÕ versus ÔcapacityÕ For the first of this dichotomy, deficit, the advisor assumes incompetence on the part of others. This is an intrinsic part of oppressive discourses that position disability in the realms of individual naturalized pathology, personal problem and individual incapability (Oliver 1996). Koegel (1986) pessimistically observes that there is a tendency to attribute incompetent behaviour exclusively to physiological causes. For SafiliosRothschild 1981), supporters who attribute incompetence to others, help to enhance their own rewards of ÔhelpingÕ and ÔcaringÕ. When someone is unable to do something, we will do it for them, we feel needed, but our control increases as a result. This is evident in the following vignette: Cliff had reported to the group many times of being bullied by supervisors at work and staff in his group home. One day after work, the taxi did not turn up as had been ordered, and he told the group how he angrily reacted to this lack of punctuality by hitting a staff member. One of the staff advisors said to another, though loud enough so the group and Cliff heard, that ÔCliff is always taking out his anger on othersÕ. She told him that she would put him down for a place on the new Ôanger management courseÕ run at one of the centres where she works. Ken told the group that he had asked one of the staff members in his house if he could make a cup of tea. They had said that he could, but on boiling the kettle another member of staff came in and told Ken to stop. Ken said this was because they thought he might scald himself. The advisors suggested that he ask the staff in his home to show him how to make a cup of tea. No one asked Cliff why he reacted like he did, or took into account the frustrations he had been feeling. The supporters might have considered what had made him feel so angry and perhaps supported him in bringing up his grievances at his workplace and home. No one asked Ken if he had made a cup of tea before. There was a focus immediately on what he couldnÕt do, and ways and means of remedying these deficits. © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 Supporting people with learning difficulties KenÕs capabilities were not considered. When I asked him if he had made tea before he replied, ÔOh yes, I make it for the mother when I saw her at weekendsÕ. By not asking ÔwhyÕ there is passive acceptance of Ôindividual pathologyÕ. In contrast, probing wider social reasons for someoneÕs actions opens up numerous causes. Ken told me that he has been in institutions for 22 years and was on the same ward with Cliff, who is some 10 years older, suggesting an even longer spell of incarceration. With this life experience surely Cliff is justified in being angry? Anger management sessions are not the answer, perhaps you just want someone to be on your side and to understand your frustrations. This understanding of people as incompetent can have massive impacts upon the collective identity and action of a group (see Campbell & Oliver 1996). When self-advocates are trying to help one another, assuming inabilities can disturb supportive interactions between peers, discourage risk-taking, self-belief and reinforce self-appraisals which augment deficits (Wilson 1992, p. 31): Lillian said she needed to phone a taxi to get home. One of the members, Karen, offered to sort it out. ÔWhatÕs the address LilÕ?Õ she asked, Ô24 Coathall LaneÕ replied Lillian. Off Karen went but one of the supporters, Jurgen, was not happy, ÔSheÕll confuse that with her own addressÕ he warned another supporter. Karen returned and was asked which address she had given on the phone, replying Ô24 Coathall LaneÕ. Even this was not enough for another supporter, June, who now questioned LillianÕs knowledge ÔIÕd best ring LillianÕs house to see that address is rightÕ. ÔNo it isÕ, shouted up Jurgen. In contrast there were many occasions when advisors opposed pathological assumptions of inability, sometimes espoused by self-advocates, recognizing ÔcapacityÕ: At every meeting a young Asian man would stand outside peering through and knocking on the window. The members of the group would shout at him to ÔGo awayÕ. The advisor suggested that perhaps the man was trying to get their attention as he wanted to join the group. One of the members exclaimed that, ÔHe wouldnÕt understandÕ, the advisor replied, ÔYou donÕt know what he understandsÕ. This alerted members in the group to the notion that a personÕs abilities are not a mere reflection of some assumed ÔimpairmentÕ. Moreover, social bases of a personÕs ÔproblemsÕ, an important construction of the social model, can be emphasized over individual problems: One of the members, Denise, said that a particular user in the centre was Ôbeing a right painÕ. The advisor reminded Denise, ÔHe has a lot of problems at home you know. You should bear that in mindÕ. Andy was supporting a centre-based group. The members had decided that they wanted to have their meetings outside of the centre. They arranged to meet in a social club and Andy had told them that if they needed him they were to phone. Some days afterwards the centre manager called Andy into her office and demanded to know why the group had met outside, ÔThey could have been run overÕ. Andy had replied ÔI could also have been run over Ð is that a problem?Õ As the renowned Canadian self-advocate Pat Worth argues, it is necessary that advisors reject a focus on supposed deficit and emphasize competence: The major barrier is attitude. People see our disability only, they donÕt see our ability. We may have a handicap but weÕre not the handicapÕ. (quoted in Yarmol 1987, p. 28). ÔMissing the pointÕ versus Ôaddressing the point(s)Õ There were many complex ways in which supporters threatened to deny the self-determination of members. At times, this was linked to focusing on the trivial Ð or Ômissing the pointÕ (see Worrel 1987, p. 34): Sarb had spent a lot of time making posters for the group. He had stencilled in the groupÕs name and cut out some pictures from a Trade Union brochure. This finished draft had been photocopied onto A3 paper and presented a striking poster for the group. One of the supporters made only one comment, ÔYouÕll have to take out the trade union name for copyright reasonsÕ. No other comments, good or bad, were given. Chris got out a pen from his bag, and asked me, ÔDo you like it? ItÕs newÕ. June, the supporter, was seated nearby listening and asked Chris, ÔIs that a new pen?Õ Chris looked bemused. Later Sarb went to the bar for a drink. He returned, as always, with a pint of lager and sat down beside Chris. June looked up and asked, ÔAre you thirsty Sarb?Õ These comments are very similar to my interactions with Jim and Imran: Jim was reading a magazine on car tyres. I asked him what he was reading and he replied, ÔA magazine on tyresÕ. He then turned away, probably concerned that he might catch my Ôasking-stupid-questions-deficit-disorderÕ. Imran saw two lighters in my bag. He asked for one, I handed it over, remarking, ÔNow donÕt go setting fire to your Ma and PaÕs house eh?Õ I smiled, he frowned and remarked, ÔIÕm not fucking stupid you knowÕ. While these interactions now seem laughable they are potentially harmful. For Guskin (1963) treating people as ÔretardedÕ can have the knock on effect that Ôacting like the retard becomes second natureÕ. Taken further, such thoughtless interactions have implications. For Worrel (1988, p. 55) an ignorant advisor misses the first and most important step of support. Without listening carefully and assisting people to express themselves, © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 443 D. Goodley we may miss out on important questions that people are asking themselves: Sarb is sick of having no money. June asked, ÔWhat is it about not having any money that you donÕt like?Õ ÔNot having anyÕ, Sarb replied. Similarly, salient issues associated with choice are ignored. Carol has been told that she and her colleagues are moving workplaces. Advisors asked what work sheÕd be doing there, one of them reassured Carol, ÔYouÕll like it thereÕ. Advisors did not find out if Carol was asked if she would like to move. Instead it was tacitly accepted that others had made decisions for her and these were fine. Self-advocates may need to be reminded of their own rights and resources: advisors will need to address the point(s) (Worrel 1988). Too often the failure of others to recognize the self-determination of people with learning difficulties surpresses their sense of worth (Atkinson & Williams 1990). On occasions too numerous to mention, many of the members of all four groups I observed would ask me, or a supporter, if they could go to the toilet. My response was, ÔYou donÕt have to ask meÕ. Many of the advisors (and selfadvocates) had wonderfully delicate ways of prodding people into opening up. Supporters would often reply to membersÕ cathartic expressions; ÔYou obviously feel really strongly about thatÕ, ÔYou seem to be angryÕ, thus reinforcing peopleÕs concerns as important (as with Dowson & WhittakerÕs Ôcathartic interventionÕ). This was also aligned with acts which Ôbrought in othersÕ. Both advisors and self-advocates appeared to be skilled at this: Imran suggested that the group keep a record of the phone calls they have made. Matthew, the supporter, went around the office telling people about ImranÕs Ôbrilliant ideaÕ. Jane often repeats things verbatim from the TV. ÔNow go over to Gillian Shepherd É what do you think Mrs Shepherd É educationÕ. Paul, a supporter, noted, ÔThatÕs a good point about education Jane, did you see it on the news?Õ Jane replied, ÔYesÕ. ÔGoodÕ, continued Paul, ÔWhat do others think about education?Õ There is movement from the specific to the general, periphery to the centre of self-advocacy. It validates JaneÕs sense of self and extends the debate to others. One of JaneÕs peers, Bill, recognized the use of JaneÕs commentaries, ÔItÕs good because Jane tells us news we have missedÕ. Two other vignettes highlight how simple questions from advisors can address basic human rights, from risk-taking to independence: 444 Virginia asked the group if they had their own keys to their homes. Adam said he had. Virginia asked him, ÔDo you let yourself in when you get home?Õ ÔNoÕ, said Adam, Ô My mother leaves the door open for meÕ. Lillian said that sheÕs not allowed to use the stove at home. Virginia asked, ÔWhy? Have you used it before? Will the staff let you?Õ Lillian replied, ÔNo they wonÕt because I burnt myselfÕ. Addressing concerns of self-advocates can help to build up collective identity of the group: an important aspect of the social model (Finkelstein 1993, Oliver 1996, Morris 1996). More about this below. Not just advising Ð self-advocates supporting one another Often regardless of advisor interventions, self-advocates themselves created a group setting that was facilitative to the development of self-advocacy. These actions are indicative of the self-help element of a social model of disability (see Hales 1996), where disabled people move towards personal and social action through the resource of collective identity (Shakespeare 1993). Self-advocates are the most important people with respect to the development of their own, and others, individual and collective self-determination. As Crawley (1988) points out, it should be remembered that self-advocates are a lot more able than even the most well-meaning advisor in promoting the empowerment of other Ôless-ableÕ self-advocates. Support should be understood, revamped and changed in accordance with what self-advocates can do for themselves. In the groups I sat in, people with learning difficulties were not passive in the doing of self-advocacy. They knew when advisors were starting to take over and challenged support: The group meeting was made up of five supporters and six members. The members were quiet, the supporters talking amongst themselves. Then Karen, one of the members, piped up ÔItÕs like a staff meetingÕ. A supporter heard this and agreed, ÔYes helpers shut upÕ. Here self-advocates themselves are resilient enough to challenge dominant supporters, including othersÕ assumptions of inability, incompetence or inappropriateness: Karen had recently had a meeting with an educational psychologist because, she joked, ÔSheÕs dumb in the headÕ. A supporter who works at the college suggested that this meeting was arranged because Karen Ôwas not joining in in classÕ. Karen disagreed Ð no she was ÔboredÕ. Meanwhile, self-advocates themselves encouraged one another to open up, accept, listen and share skills © 1998 Blackwell Science Ltd, Health and Social Care in the Community 6(6), 438–446 Supporting people with learning difficulties and experiences. Being in centres or houses together ensured that people knew each otherÕs foibles: Amanda was not sure whether or not she wanted to have her turn being chairperson for a meeting. Bill, who was chairing the meeting that day, told Amanda to have a go, ÔWeÕll help you AmandaÕ. Amanda declined but said sheÕd think about doing it another time. Sarb is having problems at home. His brother picks on him and tells him what to do. Karen agreed, she hates it when the staff watch her having a bath. Ken and Cliff fell out. Cliff told Ken to Ôpiss offÕ and went off to phone the staff in the house they both share. ÔHeÕll be telling them about meÕ Ken informed me, Ôbut I do feel sorry for him. I go and see my mother every weekend, Cliff only sees his family now and againÕ. This acceptance spread to potential members. Membership of groups was open, unconditional and encouraged: Guy told the group that a woman at his centre wanted to come down to the group. He asked the members what they thought. Richard was honest but fair ÔWell sheÕs a bit of a pain sometimes, but why not?Õ Often this sharing of skills takes on characteristics of advocacy. Friends know friends: Rachel does not speak often. She spends her time quietly and apparently contentedly smelling her fingers and looking around the room. When break-time came Bill asked her if she would like a cup of coffee or tea. Erica, who lives with Rachel, replied, ÔShe likes coffee, donÕt you Rachel?Õ Bill looked at Rachel, ÔCoffee then?Õ The interdependence aspect of a social model of disability is emphasized through a distribution of skills. Finally in encouraging peers, humour is important. In all four groups, there were particular members who were able to make people laugh and put themselves and others at ease: Karen looked depressed. As it came to her turn to give her ÔnewsÕ she told everyone that she had to go the dentist the following day. ÔAre you okay?Õ asked one of the supporters, ÔYes said Karen, my appointments at toothÕ hurty!Õ Conclusion Conceptualizing support in practice This exploration of advisor and self-advocate interventions highlights the complexities of support. However, Lukes (1986, p. 14) asks that we turn attention to the person: who takes the big decision, those that are irreversible, whose consequences risk being prolonged indefinitely, and being experienced by all the collectivityÕs members. It is fair to say that the big decision-makers in the study reported here were the advisors. As supporters, by locating our actions in discourses of disability we can understand what we do, become aware of their larger implications and take responsibility for future interventions. For policy-makers, service-providers and supporters, two general points emerge. First, following Means & Smith (1994), in the contemporary culture of Ôuser empowermentÕ and wide-spread adoption of selfadvocacy, there may be a tendency to become obsessed with the changing elements of service provision and support. However, as this paper has shown, there is still a need to consider the basic assumptions that underlie the way we address, talk and act with oppressed groups such as people with learning difficulties. Second, we need to recognize that people of any (oppressed) social group are capable of individual and collective determination. There may be a need to move away from paternalistic notions of ÔempoweringÕ people to practices that incorporate those self-empowering actions that already exist. 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