Abstract

In this paper we draw upon a research project whose authors examined the self-advocacy of people with the label of “learning difficulties.” We examined self-advocacy in action within groups and explored understandings of self-advocacy accounted for in personal narratives. We identified the background of our study, reflected on the use of ethnographic and narrative methods, and pinpointed three findings that highlight the significance of self-advocacy in the lives of people with the label of “learning difficulties”: (a) the distributed and multilocated nature of self-advocacy, (b) self-advocacy's dialogue with the relational nature of “learning difficulties,” and (c) support for the self-advocacy movement. We conclude that a variety of theoretical, policy, and practical implications surface through an engagement with the self-advocacy movement.

Background

The Growing International Self-Advocacy Movement

The emergence of self-advocacy constitutes a new social movement (see Boggs, 1996; Shakespeare, 1993). Although there are many investigators of this new movement, there is still uncertainty about the nature, meaning, and significance of self-advocacy in the lives of people with the label of learning difficulties (Dybwad & Bersani, 1996; Goodley, 2000). Existing accounts include powerful arguments made by people with learning difficulties, and their allies, that self-advocacy is an important development in terms of the opportunities it offers for developing the confidence of individuals and groups to enable them to speak out for human rights and challenge oppression in a disabling society. Furthermore, three specific political, professional, and policy concerns formed a background to our study. First, moves towards cultures created by and for people with disabilities highlight the potential of self-advocacy to challenge other exclusionary cultures (Finkelstein & Stuart, 1996). Second, questions have been consistently raised about the organization of self-advocacy groups, particularly in the rise of service-sponsored and/or professionally led collectives (Crawley, 1988; Simons, 1992; Worrell, 1988). Self-advocates have consistently treated the rise of service-based self-advocacy with suspicion (e.g., Page & Aspis, 1996/1997). In particular, the involvement of health and social welfare service professionals in disability politics has long been perceived as actually undoing the potential of people with disabilities to organize their own groups. Oliver (1990) conceptualized such professional involvement as always threatening to usurp the radical nature of self-advocacy by replacing it with a politics of enforced normalcy and centering concerns on service issues rather than wider exclusionary practices (see also Chappell, Goodley, & Lawthom, 2001). Third, our study was undertaken in a climate of reaction to recent changes in British policy and legislation that promised to “promote civil rights” and provide “empowering services” for people with disabilities (see, for example, Gooding's 1995 account of the 1995 Disability Discrimination Act).

British Disability Studies: The Developing Social Model of Disability

The theoretical importance of our study was consistently reinforced by a variety of emergent debates in British disability studies. First, our research was undertaken at a time when people with learning difficulties were, arguably, being ignored by writers examining the social model of disability (Chappell, 1998; Chappell et al., 2001; Goodley, 2001). Although disability scholars in North America have consistently included people with learning difficulties in their writings (e.g., Bogdan & Taylor, 1976, 1982; Ferguson, Ferguson, & Taylor, 1992), the British perspective has, again arguably, been grounded in a focus upon the experiences of people/political activists with “physical impairments.” Second, many disability researchers and activists with disabilities have expressed concerns about the ways in which “impairment” is left in the realms of medical discourse (see Barnes & Mercer, 1996; Corker & French, 1998; Hughes & Paterson, 1996; Thomas, 1999). In British disability studies, more so than those in North America (e.g. Linton, 1998), the terms impairment and disability are conceived as distinct phenomenon. Oliver (1990) quoted the Union of the Physically Impaired Against Segregation (1976, pp. 3–4):

Impairment—lacking part of or all of a limb, or having a defective limb organism or mechanism of the body.

Disability—the disadvantage or restriction of activity caused by a contemporary social organisation which takes no account of people who have physical impairments and thus excludes them from mainstream social activities. (p. 11)

This distinction has been incredibly helpful in permitting the proponents of the social model of disability to develop theories and pose challenges to “disability.” However, in contrast, “impairment” has been left out of social model analyses, arguably leaving it in the realms of medical knowledge as a static, naturalized, and individualized phenomenon (Hughes & Paterson, 1996). For people with learning difficulties, this omission is problematic, particularly when their very “impairments” are often viewed as the cause of their “disablement” (Goodley, 2001). Our research, therefore, began with a commitment to develop theoretical notions of impairment that emphasize the cultural, political, and social origins of meanings, experiences, and treatments that are assigned and attached to such impairment-labels as learning difficulties (Goodley & Rapley, 2001). Third, the relationship between disability research and people with disabilities/activists—such as self-advocates—remains a tricky issue in need of exploration (Barnes, 1997; Goodley & Moore, 2000; Shakespeare, 1997). Issues to explore include the ways in which participants with disabilities are involved in research, in either participatory or emancipatory ways (Barnes & Mercer, 1997; Oliver, 1992, 1996; Zarb, 1992), and the ways in which research practices physically, politically, and culturally include researchers with disabilities (March, Steingold, Justice, & Mitchell, 1997). Finally, the growing use of various qualitative research approaches, such as ethnography and narrative inquiry, are receiving some intensive analyses in terms of how they how contribute to theoretical understandings of self-advocacy (Goodley, 1999), resilience (Booth & Booth, 1998), impairment (Thomas, 1999), and disablement (Stone & Priestley, 1996).

Aims and Objectives

Against this background, we were concerned with a number of aims and objectives, including the following: (a) to examine self-advocacy as it is experienced and practiced by people with learning difficulties, (b) to develop a theoretical understanding of the concept of learning difficulties informed by the experiences and perspectives of those involved with self-advocacy, and (c) to use evidence and insights generated by the study to inform and support the self-advocacy movement.

Researching Self-Advocacy

In our study we adopted two complementary qualitative research methods: ethnography and narrative inquiry. The former was conducted to examine the workings of four self-advocacy groups; the latter allowed us to explore the lived experience of self-advocacy; both notions of participation as well as accessibility and giving back. Although beyond our scope in this paper, it is significant to mention that two researchers with disabilities carried out this fieldwork, raising important issues, such as the commonalities between researchers and participants, institutionalized disablement in university settings, and the need for research funding that adequately supports researchers with impairments (Armstrong & Goodley, 2001).

Ethnography of Four Self-Advocacy Groups

In order to probe the workings of groups, we turned to a methodology that has a long tradition in the disability studies field (e.g., Braginsky & Braginsky, 1971; Edgerton, 1967; Vlachou, 1997). Until recently, self-advocacy groups have been absent from accounts of disability culture (for an exception see Goodley, 2000) and the emergence of the disability movement (Campbell & Oliver, 1996). Our research groups were identified from a postal survey of British self-advocacy groups (from Goodley, 1998a) and through contacts made by researchers in their previous work. Four groups were chosen to (a) capture divergent organizational links, (b) represent varying advisor roles and affiliations, and (c) reflect some of the differences in the social and personal lives of self-advocates. The groups were (a) service-sponsored: a day center-based self-advocacy group supported by members from the participants' day center; (b) advocacy-supported: established by a local citizen advocacy scheme, although the group met in a local day center and was supported by a day center officer; (c) independent: met in a local community hall and was supported by a volunteer; and (d) organizational: had some coalition links with local organizations of people with disabilities, was based in its own offices, and offered self-advocacy training to local services and professionals.

Group membership ranged from 8 to 23. These groups met with our original aim of capturing the characteristics of different types of groups that make up the international self-advocacy movement (People First of Washington State and University of Oregon, 1984). For example, the organizational group straddles the typologies of independent (from services) and coalition groups (links with the independent living movement). Researchers were involved with groups in a variety of contexts, such as weekly meetings, social events, and at the day center. Over an 18-month period, two researchers spent time with the groups and individual members. On average, this ensured 2.5 days of involvement per week on the part of each researcher. Field notes were taken after every meeting and shared with the research team. Provisional analyses were made throughout the study at a number of regular team meetings. These sessions allowed us to distinguish between theoretical, methodological, and empirical field notes (see, for example, Charmaz, 1995; Glaser & Strauss, 1967; Schatzman & Strauss, 1973). Finally, we note that one member of our research team is involved as an advisor to a self-advocacy group. This allowed a certain element of checking the authenticity of research findings and an opportunity for criticality to be taken on board by the team.

Narrative Inquiry With Self-Advocates

We aimed to capture the storied nature of self-advocacy. Stories are particularly important in capturing novel or hidden cultures (Sparkes, 1994). They combine subjective positions that reference wider sociocultural backgrounds (Bertaux, 1981). Furthermore, they have the potential to contribute to disability research in ways that emphasize the significance of the voice of people with disabilities while providing contextual frameworks for deep analyses of disabling and disability cultures (Barnes & Mercer, 1997; Finkelstein, 2001). There were four parts to our narrative inquiry. First, we wrote up the detailed life stories of 17 key informants, drawing upon in-depth interviewing (Parker, 1992; Taylor & Bogdan, 1984), including 9 women and 8 men, 2 of whom were from black ethnic communities. The greatest number of interviews held with a single participant was eight; the least, two. Participants' ages ranged from 20 to 63 years. In two cases, 2 informants were interviewed together, though their stories were written up separately. Each interview lasted, over a varying number of sessions, between 3 and 20 hours. Second, in addition to the life stories, we collected a number of what we termed accessible narratives. These included the lifelines of a further 30 self-advocates and the collection of 16 circles of importance (see below for more details). Third, group interviews were carried out with each of the groups, with advisors often leaving the context so as not to stifle any conversation. Fourth, four supporters across the groups were interviewed a number of times. One of these supporters has been labeled as having learning difficulties and so allowed for an interesting analysis of contrasting identities of disabled and supporter. Extensive time was allocated to research relationships: explaining the research, building up trust and rapport, not least in dealing with the disclosure of sensitive material and promoting collaborative narrative construction (Ferguson et al., 1992; Goodley, 1998; Taylor & Bogdan, 1984). All narrative sessions were extended and held in addition to the many hours spent with participants who were not audiotaped. All participants were members of the research groups and were normally approached if they showed particular interest in the research. Participants were involved in the editing of their accounts, and a number of them raised interesting issues in relation to working with uncommunicative or inarticulate people.

Participation, Accessibility, and Giving Back

Throughout the study, we followed a participatory research philosophy (see Zarb, 1992). In the early stages of access, we made reference to accessible introductory leaflets, which combined pictures and prose, that outlined the research; gave examples of how participants might like to present their stories in a life story workshop developed by one of the researchers; and clarified difficult concepts, such as “rights” and the “social model of disability” through the further use of illustrated leaflets. This philosophy ensured that the research process was, to some extent, steered by research participants. One researcher worked with a self-advocacy group whose members requested that she help them disclose their stories over the course of a number of meetings. The researcher consequently developed the imaginative strategy of constructing circles of importance, which involved participants sitting in the middle of a room, with researchers drawing circles on paper placed on the floor and used to identify important individuals and events in each participant's life. Our introductory leaflets were appreciated by participants, mirroring their stance against jargon and enabling us to tackle informed consent through recourse to accessibility. In group discussion sessions, we adopted accessible methodologies, such as the use of pictures and prose to support the participant's disclosures. Gaining consent, maintaining confidentiality, and ensuring anonymity concerned us and the participants throughout the study. As Tiger Harris put it in relation to anonymizing his life story, “Things are private and I can say what I want but no one can take offence!” The research team strove to give a variety of things back to the groups. For example, the advocacy-supported group asked for help in accessing the views of users of the local day center. Many of the members attended this center and had strong opinions on the good and bad practices within it. Consequently, a questionnaire was devised and a report written through engaging with self-advocates and other users during a number of meetings. Indeed, this report led eventually to the center being awarded a Charter Mark for Innovation. The independent group felt that they wanted more than a collection of stories or summary reports from their involvement, so group members asked the researcher to work with them to present a performing arts piece that captured their group history and explained the meaning of learning difficulties. This was later presented to a mixed audience of self-advocacy groups, users of services, workers, and service providers.

Making Sense of Self-Advocacy

Our analysis draws upon the principles of grounded theory (Schatzman & Strauss, 1976). Knowledge inductively emerged from the material collected, and this new material was reflexively combined with our own theoretical perspectives. A major theoretical resource for our team was a critical engagement with the social model of disability, particularly a social constructionist stance (Priestley, 1998), which emphasizes the meanings embedded in the abilities, resilience, and group activism of people with disabilities alongside incidents of disablement, exclusion, and oppression (Oliver, 1996). Significantly, in our analyses we attempted to conceive of people with learning difficulties as active participants in their own self-determination. Specifically, the analyses developed below go beyond previous findings on self-advocacy undertaken by the first author (Goodley, 2000). In this paper we identify three themes relating directly to our original aims and objectives (outlined above).

The Distributed and Multi-Located Nature of Self-Advocacy

In previous literature on self-advocacy, investigators have emphasized the typology of groups within the movement and their varying impact upon the emergence of self-advocacy (e.g., Crawley, 1988, 1990; Hanna, 1978; Worrell, 1987, 1988). A major focus has been on the growth of self-advocacy groups in service settings and the influence of professionals who become involved in supporting such groups (Dowson & Whittaker, 1993). In these analyses investigators view self-advocacy from the top-down. For example, a center-based self-advocacy group's location within health and social welfare services is evaluated in order to uncover the potential pitfalls (and possible benefits) of service sponsorship. Although there are clearly dilemmas with self-advocacy groups becoming part of service initiatives (Page & Aspis, 1996/1997), our research suggests that members of self-advocacy groups hold complex and sophisticated understandings of self-advocacy that are rarely touched upon by appraisals that overly concern themselves with group type and affiliation. We can identify two points of analysis. First, self-advocacy is distributed. Perhaps the most oft-cited reason for attending self-advocacy groups was the potential for forming and maintaining friendships. The profound significance of this can be comprehended in light of the lack of opportunities to meet with others in a context and at a time that is self rather than predetermined by others:

I still see my friend Shirley. We went to school together. Now I see her when we go swimming. The boss organises the swimming—the boss of the Centre. (Andrea Simons, life story—note: all names given in this paper are pseudonyms)

I sometimes go out to the club, which is on a Friday night. It's a working men's club and ladies are allowed to go as well. I do go, but not anymore, because my Step-Dad's not been out. (Tiger Harris, life story)

Members of the group should go out together more, perhaps even on holiday together: socialising and that. (Heather Parrot, life story)

When self-advocacy groups were alluded to, this was often done in direct contrast to other cultural and institutional contexts that were viewed as limiting. Andrea Simons' story contrasts the meaningful nature of being a self-advocate with the emptiness of “work” in the center: “I work on the reception in the Centre. Well, just pretending you're writing in a diary or something” (Andrea Simons, life story). Self-advocacy groups, therefore, have the potential to offer stable, safe contexts that may contrast with community care settings designed by others:

I've lived in lots of places. Group homes, with my mum, with lots of people. I find it hard to make friends. I stayed in places for 6 months at the most. Then the teenagers started. I have had loads of cares, support workers and the like. At night, I pack my bag for the morning. Up at 7.30 and off to the group. (Heather Parrot, life story)

I'm always seeing the same people every day too. Some of the people at the Centre went to the same school as me and now they're at the Centre. I would really like to meet other people because I see the same people at the Centre, at the clubs that I go to and just about everywhere I go. . . you run out of things to talk about after a while. (Gary Hargreaves, life story)

When I go out, I go out with someone, not on my own because it's not safe—I think that other people have told me it's not safe. If I go out on my own, I get worried and I get a bit frightened. (Dorna Mack, life story)

A number of self-advocates emphasized the importance of friendship, even in the seemingly most disabling contexts, while their stories oozed with resilience (Goodley, 2000). Aled Thomas told us about a lifetime of rejection, sexual and physical abuse, and lack of security as he was moved from one family member to another. Even so, he remains resolute:

The final thing I'd like to say is that any time you find yourself in a position that I've been in, just don't give up! If anyone feels how I feel about being lonely, I'd say, “Don't feel alone and give up.” Keep going, because there's hope out there. There's a life. There's someone for you. (Aled Thomas, life story)

Interestingly, Aled did did not mention the self-advocacy movement once in his account, though he clearly highlights the need for comradeship, a quality often associated with new social movements. Victor Moon reminded us of the variability of life experiences, reflecting on the solitary past from a relatively social active present (Thompson, 1988):

I made my own games too. I made them up for me. When it was raining outside. I stayed inside and played them. I made the ball hit the back door and it came back to me. I did that all the time. (Victor Moon, life story)

Our second point of analysis recognizes that self-advocacy occurs in and outside of the self-advocacy movement. The stories we collected situate self-determination in the life course (Cohler, 1991), where elements of self-advocacy can be found in events from childhood to adulthood, in private and public ways, in and out of self-advocacy groups. Life stories are imbued with various elements of choice, decision-making, and reflexivity on the narrator's “lot in life.”

Telling you about what has happened, we're right aren't we? We know what we want don't we? People should listen. . . It's not right it is that people call you retard is it? Not them in the bus stop. I ignore them, I do. (The views of Neil, field notes, 1999)

Crucially, certain cultural contexts are identified as being more open to the narrator's ambitions and aims. Here, ethnography clarifies the variable impact of these different cultural contexts (Edgerton, 1967). Crucial to emergent understandings of self-advocacy is to note that it is a phenomenon created in direct response to a variety of opportunities and chances that are not made available. It does not just emerge as a direct consequence of self-advocacy group membership but often has wider familial, cultural, social, and historical origins. For example, a recurring theme for those who spoke about their family life was the determination of parents.

I could see my Dad sat on the chair. I thought it was a dream but he spoke to me. He told me how he loved me and that I was lucky to survive such a bad accident. I saw him again for a few nights, and one night, he said, “I'm going now. You won't see me for a long time”. It was weird because although he'd passed on, he came back to watch over me. A guardian angel. (Aled Thomas, life story)

This parallels findings in an earlier study by one of the authors (Goodley, 2000), where informants with the label of “learning difficulties” reflected upon the commitment of their parents: Lloyd Page's mother had told him that there was a place for him in the world. He and his mum, “Went for it”; Jackie Downer's mother was strong and a great source of strength. Joyce Kershaw's dad was all for her helping to set up a People First group. Anya Souza's mother pushed for Anya to attend mainstream schools:

In my special school everyone picked on me all the time—non stop—either because I had Down's Syndrome or I was the odd one out. I am too bright to be in a school like that because my Mum brought me up in her natural way. To be as normal as possible.

This statement illuminates what Corker (2001) meant by the centrality of life experiences to any understanding of disability politics and identity: Self-advocacy is not something that can be artificially pinned onto those who need it (through, for example, the setting up of self-advocacy groups by well-meaning professionals for their clients) but something organically and culturally created in response to enabling and, paradoxically, disabling environments (see Page & Aspis, 1997). This raises issues about how we understand disability politics, to which we return later in this paper.

Self-Advocacy's Dialogue With the Relational Nature of “Learning Difficulties”

Imran found an old lighter in my car. He asked me if he could have it. I gave it to him with a patronising warning, “Now don't go burning down your mother's house will you?!” He looked at me with despair and retorted, “I'm not fucking stupid you know.” (from Goodley, 2000, p.183)

We are not daft you know—we are ordinary people with “learning difficulties.” (comments from a member with learning difficulties, Goodley, field notes, 2000)

Our original aim of exploring the construction of learning difficulties was met, particularly through the stories and accounts that we collected illustrating the shifting and moveable nature of learning difficulties (see also Goodley, 2001; Goodley & Rapley, 2001). The narratives we collected in the field contribute to a body of literature connected with the social construction of learning difficulties in North America (e.g., Bogdan & Taylor, 1976, 1982; Ferguson et al., 1992; Goodley, 2001; Whitemore et al., 1986). When asked what they understood about the label “learning difficulties,” informants drew upon various notions of impairment:

I think I was happy when I was small, but on some days, I weren't. I don't know about when I was a baby. . . I know that I couldn't walk then and I still can't. Its because I was born early—I was premature—and my brain had low oxygen. . . My Mum said to the nurse, “This baby's passed. He's got took.” The hospital made a mistake and I was there for two weeks. (Victor Mason, life story)

What I want to say about what it's like having a learning difficulty, and how people treat you is it sometimes can be a bit awkward, if you know what I mean? Because people seem to stare at you and things like that but I just try to ignore them by not looking at them. Nobody's perfect! Everybody's got problems in different ways. We should all look after each other. That's the way it works! The other thing is that I don't have anything to do with psychologists. They don't try and help people they just tell them they're not normal. People who can't do things like tests and things. (Tiger Harris, life story)

I were bullied a bit at school. . . because I was classed as slightly different and not one of the crowd. I had my haircut and in a quiff with big thick glasses, like Buddy Holly. I used to get the rise taken out of me for that and I wasn't that confident. But it's nice not being one of the set crowd and it's their ignorance. I saw this girl in the pub the other night and she said “Sorry for taking the rise out of you.” (Steve Grundy, life story)

Apparently, Mum had a difficult time when I was born. (John Coltrane, life story)

All of the narrator's views on learning difficulties highlight how impairment is constructed in a variety of sociocultural and interpersonal contexts. Indeed, Victor Moon's relationship with his mother influenced negotiations of (in)capacity:

My mum used to make a lot of decisions for me. She used to get me all my clothes and things like that. But when I was older, I had to tell my mum what to do because her mind was going.

Perhaps common to many of the informants' perspectives is the idea that impairment, in terms of learning difficulties, is relational. Whenever ability or capacity was referred to, this inevitably involved consideration of the ways in which a whole host of others perceived, reacted to, and treated the person so-labeled. On a positive note, members were keen to draw their attention to peer support:

Tony: I'm helping Heather if it's alright.

Heather: Thanks Tony.

Interviewer: That's fine yeah.

Tony: I'm helping Heather. (Organizational group, field notes)

I try to be kind to everyone and help them if I can. I like most people and get on with them because that's what you should do. Lots of people like me too. I always try to give people a chance.. . . We all listen to each other and we help each other and things get done. (Gary Hargreaves, life story)

It's helped me being in a self-advocacy group because my friends help me to stick up for myself. When my friends are down, I help them and when I am down, they help me. (Dorna Mack, life story)

As Bob Healy, an advisor to one of our research groups, put it, one of the key aims of self-advocacy groups is to provide peer support: “to support each other as well. That's the group in a nutshell.” Many of the members of the self-advocacy groups were aware of the necessity for supporting one another and the impacts this has on one's abilities and opportunities:

I met my fiancé about two and a half years ago, at the Day Centre. . . I don't want to get married too soon, though. I'm waiting until we get all our support workers sorted out because I'd rather take it slowly and easy to make sure everything's okay. (Aled Thomas, life story)

When me and my boyfriend get married we can't have children, I've no where to put them.. . . We want to live together but we don't want staff. We'll manage to get on and I'll get him to do the cooking and the cleaning. I'll get him to do it all, but if he can't I'll have to do it! (Dorna Mack, life story)

We were struck by the ways in which interdependency was understood and enacted within self-advocacy groups. Following Oliver (1996), instead of viewing impairment or abilities in terms of individualized qualities, people with the label of “learning difficulties” clearly understood necessary elements of social life: living with, relying on, and supporting one another. In doing so, self-advocacy groups appeared, to varying extents, to open up dialogue about the nature and meaning of learning difficulties. In self-advocacy groups, none of the members had extensive notes written about them as they did in the service settings that they attended. Perhaps, self-advocacy allows a trajectory out of “service surveillance” to a place of hopeful privacy. In another sense, however, members were often eager to talk through the meanings attached to their learning difficulties:

In the car with Jenny in the front, Adam and Gabriel in the back. Jenny's crutch is placed to her left side, away from the gear lever. No spaces to park outside the library. Adam has a thought; “I know we can park in the disabled spaces, because you're disabled aren't you Jenny?” “No I'm not,” replies Jenny, “I haven't brought my [disabled parking] badge with me today.” (field notes)

The relational aspect of being labeled as “learning disabled” was consistently opened up for consideration:

If I had a job and a girlfriend then I could look after her in our house and she could give me care and love. That's what I want from life—It's not too much to ask now, is it? (Gary Hargreaves, life story)

I was with Pam. I couldn't get on with her mother. She wouldn't let Pam have a relationship. Of course, I used to meet her at night at the bottom of the lane. She knew me and Pam were going out, but it was like, you know, if we “bumped into” one another. Pam's Dad was totally opposite. He was like, “Let them get on with it.” (John Coltrane, life story)

By opening up dialogue, it would appear that self-advocacy groups necessarily permit members to tackle the most basic human rights that, for some, may at the moment seem like distant dreams. Of course, dialogue is not without tensions. The apparent development of a relationship between two self-advocates in the independent group was picked up on by other group members to the apparent unease of these two people:

The group members encouraged them to see each other, insisting Susie should tell her Mum about the relationship, “You're not a kid, you know. You can have a boyfriend if you want—its your right.” Then Susie reacted, “I'm fed up everybody telling me what to do. Since I was really little, everyone's been telling me what to do. I'm sick of it.” [I followed Susie out of the room.] “I didn't know you were seeing Tony?” “I'm not,” replied Susie, “That's the problem.” (field notes)

Alongside these dilemmas, we were struck by the potential of self-advocacy groups to offer what Vincent (1998) called alternative frameworks of sense: to offer alternative visions of life to those often imposed by disabling expectations and pathological prognoses.

Supporting the Self-Advocacy Movement

Our research provided us with a snapshot of support in the self-advocacy movement. First, it is fair to say that the life of a self-advocacy group is constantly under threat. The location of a group in the unstable voluntary sector means an uncertain future. Meanwhile, a service-sponsored group faces particular difficulties (Goodley, 2000; Simons, 1992). In her life story, Edna Richardson drew attention to a conflict of interests faced by her group's advisor (see Hanna, 1978). Meeting in a center meant that their advisor (who was the key worker to a number of clients) was often called away during meetings to attend to other users' needs. Self-advocacy suffers as a result of it being one of many professional responsibilities. Similarly, when the center group chose to meet outside of the center, this created issues of control: We had arranged to meet with members of the group. When we arrived we were told that the group had already been taken to the college. We were given directions to the college and eventually joined the meeting.. . . At 3 pm, the transport (segregated coaches funded and organized by the local social service department) began to arrive to collect people and transport them home. The time that the group begins and ends its meetings is determined by the routine of the day center and the availability of transport.

This contrasted with the organizational group's equal opportunities plans: “Some people need support to get to meetings by bus. People can meet and travel together for support but still be independent.” (notes taken from group's minutes of meetings)

Paradoxically, experiencing the stifling elements of services may have some rewards in terms of breeding critical consciousness among self-advocates. Indeed, our second point of analysis here relates to the ways in which self-advocacy groups promulgate a sophisticated knowledge about what constitutes good support. A rich experience of support and professionalism appeared to enable the development of critical consciousness, evidenced in a number of expert critiques:

The Day Centre hasn't changed much.. . . as for the manager, he has actually done a management course, but I think he needs to go back and do his course again because he won't take any responsibility for some of the things that were going on. (Tiger Harris, life story)

I was living in a house with some staff but it was boring. They wouldn't let me do what I wanted to do.. . . sometime when I do something wrong, like banging things on the table, they shout at me. When people shout at me, I get really angry with them and throw a temper. (Dorna Mack, life story)

In contrast, groups had very clear visions of what constituted good support:

A good support worker is: patient, helps people to choose, put yourself in someone else's shoes, action—to make things happen, power, where to go can let someone take risks.. . . A bad support worker: doing it for other people, people who think they know best, playing god, not listening, no time to give, heart not in it, telling people what to do. (taken from training notes)

Third, the nature of support offered by advisors has a variety of institutional and discursive origins. The relative independence and location of supporters in services inevitably impacted upon the support offered by advisors: When supporters from the center group talked about members of the group, during our interviews with them, they often alternated between talking about members as “self-advocates” that they supported and “clients” who were under their jurisdiction and care.

When professionalism usurps the wishes of self-advocates, then the whole meaning of self-advocacy becomes tied up, yet again, in professional discourse. This suggests that (some) professionals bring baggage with them—and associated discourses of professionalism—that can confuse the aims of self-advocacy (Worrel, 1988). Our research groups captured very different service, advocacy, coalition, and independent affiliations (see People First of Washington State and University of Oregon, 1984). Yet, interestingly, when we asked self-advocates about their supporters, they were positive (almost without exception), regardless of supporters' affiliation or professional accreditation. This positive attitude suggests that the nature of support is more complicated than the particular independent or professional role of support. Indeed, recent analyses by the first author suggest that professionals actually might be able to draw upon a variety of enabling (as well as disabling) discourses in their interventions of support, often regardless of their (lack of) service affiliations (Goodley, 1997, 1998, 2000). For example, it is possible to identify supportive interventions that may be termed advisor centered. Typically, advisors respond to the requests of self-advocates with, “I'll have a chat with someone on your behalf” or “Don't worry yourself, I'll sort out your problem.”

For example, Jim lives in a group home and is very unhappy with his bed, describing it as “too narrow.” One of the supporters, a manager of one of the nearby Adult Training Centres told Jim, “That's being sorted out for you.” Karen mentioned that she was worried about her “sick note” that she needs to collect her benefits. One of the supporters, who happens to be Karen's key worker, told her, “Someone's sorting you out with that.” Matthew, an advisor, had a tendency to tell off members. He told people to be quiet because he wanted to talk to Robert. There is a fine line between group rules on “not talking when others are” and disciplining people (Goodley, 2000, pp. 178–179).

Here support is individualized in terms of staff–client-like relationships. 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 “working pairs,” and all members of the group do not deal with a member's concerns. As Worrel (1988) observed:

Professionals are trained to see members as clients. . . . to deal with people one-to-one with measurable and predictable results. This approach does not work with a group that is growing and evolving as it goes along. (p. 39)

Advisor-centered interventions may uphold professional ethics and a preoccupation with client needs (Gilbert & Specht, 1976). Moreover, an expert advisor culture of paternalism may be bred (Khan, 1985), and self-advocates may find it difficult to challenge inadequate interventions alone. Now, in this culture, the self-advocate may feel intimidated asking for support. Those benefiting are primarily the advisors: “It flatters our ego to feel we are needed, it is often so much easier and quicker to do things ourselves (Dowson & Whittaker, 1993, p. 14). “It is tempting to let this attention go to our heads” (Worrel, 1987, p. 34). However, we also can identify self-advocate-centered interventions. These are characterized by, “Why don't you have a chat with someone” or “I'll support you tackling your problem” responses to requests. Three vignettes from a service-based group, supported by an advisor as part of their job, highlight this (Goodley, 2000,):

Dorothy is sick of people pushing in front of her in the dinner queue. The advisor suggested that they could “Have a chat with the staff on dinner duty.”

Denise was interested in the story of a couple with learning difficulties who had bought their own house. “I'd love to do that,” she told the group. Her advisor suggested that Denise should talk about it at her IPP.

Lesley told the group that she was not interested in going to the local advocacy project meeting because as a nonreader, she finds it difficult to read the minutes: “They should use pictures.” Louise suggested to Lesley, “You should have a quiet word with the people there to see if they will change the format of the minutes.” (p. 180)

In these interventions the advisor appears to intervene in ways that do not enforce her authority (as a member of service staff) over the group. Over time, through encouraging members to speak out, the support that one self-advocate receives is passed on to peers. This links into interdependency, which for Oliver (1996) is a key tenet of a social model of disability. Issues and concerns that others may share, or may later have to deal with, are made public within the group. In doing so, advisors made it known that they are there for members to offer support and back up their ambitions.

Finally, in relation to supporting self-advocacy, issues were raised here about what is actually supported in groups. Here the very nature of disability activism in self-advocacy groups is illuminated:

I used to be a member of loads of committees fighting for rights and all that. . . yeah, and the Disability Movement do some great stuff for other people, but how's all that stuff on politics going to get me a girlfriend and a job? (Tiger Harris, life story)

Tiger reminds us that basic choices are often so difficult to enact because of the prejudice and surveillance of others. Privacy and individuality may be ignored in the search for group rights. This point has obvious consequences in a whole host of policy-making contexts. Rights for many self-advocates were associated with a variety of individual choices, the chance to take risks and adopt adult roles (Mitchell, 1997). For people with learning difficulties, the most basic of rights are frequently denied, but there is a danger that we lose sight of them as we get caught up in the changing elements of policy and welfare (Means & Smith, 1994). As a supporter to the organizational group pointed out, one of the most articulate members of the group was the exact opposite when at home with his family.

Conclusion

It is clear to us that self-advocacy constitutes a thriving sociocultural and political movement. Our findings, of which only a few are considered in this paper, have a number of implications. First, self-advocacy groups appear to be culturally rich in terms of the opportunities and meanings that they provide members. Yet, policymakers and professionals need to remember that self-advocacy exists in a variety of places in the labeled person's life, in and outside of self-advocacy groups, often in spite of the most exclusionary experiences. Viewing self-advocacy as something that people with learning difficulties need to be taught, may do a massive disservice to the already existing resilience and self-advocacy (Goodley, 2000). Second, we must call upon self-advocacy groups to make sense of the theoretical construction of learning difficulties. Academics and theoreticians too often view their work as outside of the cultures created by people with learning difficulties. An engagement with self-advocacy may allow us to bridge the gulf between actuality and the academy (Goodley & Moore, 2000). Third, self-advocacy groups are contexts in which the dilemmas associated with buzz words, such as empowering support, respectful care, and interdependency are fought with on a daily basis. Self-advocacy groups must be consulted to meaningfully address professional practice in this age of “user consultation.” Groups boast rich cultures that can instruct professionalism. It would prove productive to respectfully draw on the experts within the self-advocacy movement before trying to make sense of support in the cosy haven of professional circles.

NOTE: We gratefully acknowledge the support of the Economic and Social Research Council, Britain (Research Grant R000237697). The term learning difficulties was chosen instead of other synonyms such as mental handicap, mental retardation, or learning disabilities because it is the term preferred by many in the British self-advocacy movement, which was the focus of our research. As one self-advocate noted, “If you put ‘people with learning difficulties' then they know that people want to learn and to be taught how to do things” (quoted in Sutcliffe & Simons 1993, p. 23).

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Author notes

Authors:Dan Goodley, PhD ( d.goodley@shef.ac.uk), Derrick Armstrong, PhD, and Linda Laurie, BSc, University of Sheffield, Inclusive Education and Equality Research Centre, School of Education, 388 Glossop Rd., Sheffield, England S10 2JA. Kath Sutherland, BSc, START(Ability), 408 Belmont Rd., Bolton, England BL1 7DH