Abstract

Research has shown that people often do not claim labels associated with mental retardation or learning difficulties. We discussed the interpretation that this rejection is an example of a denial process, the purpose of which is to protect self-esteem. Alternative explanations for this lack of identification were offered, based on an understanding of the socially constructed nature of diagnostic labels and on the distinction between diagnostic labels and social categories. Some of the problems in using the label as a descriptive or explanatory resource are illustrated using quotes from a study in which people who have been labeled discussed the label.

In this paper we investigate reasons why people who have been labeled as having mental retardation (United States), learning difficulties/disabilities, or mental handicap (United Kingdom) may not identify themselves with the label. (We use the terms learning difficulties and mental retardation interchangeably in this article. When referring to particular studies, the term used by the participants of those studies were used. When referring to our own research, the terms learning difficulties/learning disabilities were employed.) These terms replaced mental handicap in the 1980s and refer to the same group that is labeled as having mental retardation in the USA.

Although writers often assume that this lack of identification is the result of a process of denial that serves to protect the person's self-esteem, the research described here suggests other explanations are also important. In particular, distinguishing between the label as a diagnostic category and as a lived social category suggests a range of alternative, more mundane explanations for why people may not claim the label. These explanations follow from an understanding of the label as a social construction.

A number of researchers have found that a significant proportion of people who have been labeled by the services they use either refute the applicability of the label to themselves or do not use the label spontaneously to describe themselves or explain the situations in which they might find themselves (e.g., Bogdan, 1980; Castles, 1996; Davies & Jenkins, 1997; Edgerton 1993; Finlay & Lyons, 1998, 2000; Jahoda, Markova, & Cattermole, 1988; Mest, 1988; Rapley, Kiernan, & Antaki, 1998; Simons, 1992; Szivos & Griffiths, 1990; S. Taylor, 2000; Todd, 1995; Todd & Shearn, 1997; J. L. Turner, Kernan, & Gelphman, 1984; Zetlin & Turner, 1985). Of course, some people do use the label, either to describe themselves (e.g., Jahoda et al., 1988; Zetlin & Turner, 1985) or as part of a political analysis of the situation they find themselves in. This is important in the self-advocacy movement, and the label “learning difficulties” is clearly used in this way by many self-advocates in the United Kingdom as well as in the self-advocacy literature (e.g., Aspis, 1997; People First, 1994, 1996; Simons, 1992).

In psychology it is often assumed that membership in devalued groups can create problems of self-esteem, and people may cope with this by distancing themselves from the group (e.g., Clark & Clark, 1947; Goffman, 1963; Lewin, 1948; Link, 1987; Tajfel & Turner, 1979; D. Taylor & McKirnan, 1984). Similar interpretations are often used to explain people's lack of identification with labels associated with mental retardation/learning difficulties (e.g., Castles, 1996; Craig, Craig, Withers, Hatton, & Lamb, 2002; Edgerton, 1993; Szivos & Griffiths, 1990; Sinason, 1992; J. L. Turner et al., 1984). In such accounts, denial of the label is seen as a strategy to protect self-esteem. This is found in Edgerton's classic book The Cloak of Competence (1993), in which he noted the tendency among people who had left state institutions to avoid acknowledging that they were “mentally retarded.” Edgerton explained this as being the result of stigma, suggesting that acknowledgment of the label or condition would be “potentially devastating to their self-esteem, and if the integrity of the self is to be maintained, imputations of stupidity must be denied” (1993, p. 152). A similar statement is made by Turner et al., who suggested that “denial is a strategy that many use to maintain positive feelings of self-worth in the face of one of the most stigmatizing labels our society has to offer” (p. 63).

In addition to a lack of self-identification with the label, a range of social behaviors are also interpreted as being due to this process. These include hostility, the avoidance of situations likely to highlight a lack of competence, avoidance of others with the label, the “manufacture” of alternative explanations for events and situations, defining mental retardation in terms of those with severe and multiple impairments, and a general lack of discussion of the topic in services (e.g., Edgerton, 1993; Gibbons, 1985a, 1995b; Sinason, 1992; Szivos & Griffiths, 1990; J. L. Turner et al., 1984; Yaerley & Brewer, 1989). When people represent themselves as having alternative identities, this is also sometimes interpreted as a strategic response to head off stigmatized identities that are presumed to be interactionally salient in some way (e.g., Rapley et al., 1998).

A number of writers have taken issue with such interpretations and criticized Edgerton's acceptance of the label as an objective “fact” (e.g., Bogdan, 1980; Bogdan & Taylor, 1994; Gerber, 1990). In this paper we extend these arguments by looking in more depth at why the label might be problematic as a description or explanation in the everyday lives of those who have been labeled and by locating the self-esteem interpretation in a personal tragedy model of disability. Based on social models of disability, we distinguish between the label, the specific difficulties a person has, and the social category associated with the label, as well as highlighting different types of denial. Within this framework, theoretical discussions of the social construction of the label can be linked to the difficulties people face when attempting to apply the label in everyday contexts.

To understand why people may reject the label, we believe that a number of conceptual distinctions need to be made. First, there is a difference between acknowledgment of one's particular limitations in practical or cognitive tasks and acknowledgment of a general label. It is possible to acknowledge both, deny both, or to acknowledge one and deny the other. Many studies have shown that even when people deny or do not claim the label, they are quite willing to talk about specific difficulties and needs they have as well as the oppressive situations they find themselves in (e.g., Bogdan & Taylor, 1994; Castles, 1996; Davies & Jenkins, 1997; Flynn & Saleem, 1986; Jahoda et al., 1988; Koegel & Edgerton, 1982; Mest, 1988; Rapley et al., 1998; Reiss & Benson, 1984; Simons, 1992; Szivos & Griffiths, 1990; S. Taylor, 2000; Zetlin & Turner, 1984). Even when discussing only specific areas of competence, one might acknowledge some limitations and deny others. Second, because adjustment to disability is not necessarily the same as adjustment to others' attitudes to disability (Mest, 1988; Olney & Kim, 2001), denial can be understood in different ways:

Denial as repression

People do accept that the label applies to them, or that they lack specific competencies or opportunities, but they suppress this from awareness to some degree. Denial in this sense is as much aimed at the self as it is aimed at others (e.g., Edgerton, 1993, Szivos & Griffiths, 1990; J. L. Turner et al., 1984). As Lenny (1993) pointed out, however, denial in this sense is not usually easy to prove (see also Zetlin & Turner, 1984).

Denial as passing (Goffman, 1963). People accept the label but conceal it in order to save face or to avoid prejudice. In terms of particular lack of competencies, they may hide a lack of skill while privately acknowledging their difficulty. Passing may also be a social strategy to make others feel comfortable. This is described by French (1993) with respect to living with a visual impairment and is likely to be important for people with learning difficulties. In this case the person minimizes or denies their label or their specific difficulties because they have learned that people without disabilities feel awkward or guilty when the issue is raised.

Denial as the rejection of the usefulness of the concept or the rejection of others' definitions

People are aware that others might label them but reject the act of labeling and its social implications (e.g., Bogdan & Taylor, 1994; Gerber, 1990). They may or may not accept the label as valid. In some cases, they may find the label maps onto their experience badly and clouds rather than enlightens their understanding (Bogdan & Taylor, 1994). In other cases, as Rapley et al. (1998) pointed out, people might reject or redefine the label, or present alternative identities, for local, interactional reasons. These authors suggested that people may accept the label, or their difficulties, while rejecting the social restrictions or stereotypes that others might assume. Disavowing or minimizing the label might then be aimed at rejecting erroneous and negative social assumptions associated with the label rather than denying one's specific difficulties.

Denial in the first sense is based on medical and personal tragedy models of disability (Abberley, 1993; Brisenden, 1986; Hunt, 1966; Lenny, 1993; Oliver, 1990), where the label is assumed to represent some fixed characteristic or essence of the person (Danforth & Navarro, 1998; Gelb, 1997) and to be the most salient aspect of a person's identity. In the personal tragedy model, the most important feature of the label is its negativity. The job of researchers, then, is to study how people cope with this problem, both in the organization of their lives and in their emotional adjustment to the assumed loss of function and role. An important feature of coping identified by psychologists is the imperative to form a positive sense of self. In this model, denial is seen as a maladaptive coping strategy, a failure of adjustment (see Abberley, 1993; Lenny, 1993), and a failure to come to terms with the “truth” about oneself. The personal tragedy model, then, is taken as the background “reality,” the truth from which explanations are generated and its assumptions and usefulness are unquestioned. Identity is then understood only in terms of the problem of coming to terms with difference from some standard of normality. The myriad alternative bases of identity, alternative dimensions and targets of comparison, alternative value systems, and constructions of disability that are available, as well as the fluctuating nature of identity claims in interactions, are all neglected in favor of this single factor.

This is a limited way of discussing both disability and identity and serves to reify the concept of “mental retardation” or “learning difficulties” (Bogdan & Taylor, 1994). Not only does it ignore these other types of denial, but if people who have been labeled offer alternative constructions, and these constructions are explained away as coping responses, then their power to make us question the way the label is seen is neutralized (Abberley, 1993; Fine & Asch, 1988). Bogdan and Taylor (1994), in presenting the autobiographies of Ed Murphy and Pattie Burt, suggested instead that people's versions of themselves and the situations they find themselves in may differ from official discourse because they are generated from different positions in the service industry. They criticized Edgerton for not accepting people's explanations and for assuming that official, clinical descriptions are the truth against which the accounts of the research participants are to be judged (see also Gerber, 1990).

Social models of disability (e.g., Goodley, 2000; Gordon & Rosenblum, 2001; Oliver, 1990) are useful in pointing out that disability needs to be understood with reference to cultural and social structural factors. The distinction above illustrates that denial can be understood as a way of managing other people. It can also be understood as a rejection of prejudicial implications or conceptual systems that do not work very well in the person's experience. In this context, learning difficulties is not just a diagnostic label and is more than just an identity that might, in some contexts, be seen as negative. It is also a social category with a (disputed) membership of individuals who have a heterogeneous range of abilities and disabilities (Davies, 1998; Smith, 2002). It is associated with a variable set of services, areas of physical space (Danforth & Navarro, 1998), and relations with other social groups as well as being constructed by a range of sometimes contradictory public representations and discourses. Although labeling may have arisen through a psychological or psychiatric assessment at some point in a person's life, usually far back in his or her history, from day to day the label exists in local institutional practices and interactions rather than in the idealized (and usually absent) world of diagnostic categories. These interactions involve identifiable subgroups of individuals, patterns of service use that sometimes unite and sometimes differentiate people, patterns of mutual support, and a membership that may change over time.

Although the distinction was made above between a general label and a person's specific patterns of difficulties or needs, a further distinction can, therefore, be made between a diagnostic label and the social category that it creates. When we begin to see the label as a social category, and in particular as a social category that is problematic in various ways, then alternative understandings of why people may not identify with the label become apparent. It is worth examining, then, just what it is that people are not actively claiming. Where does the label come from, how is it played out in day-to-day terms, and how does it map onto groups of people in particular social contexts?

The label or category does not represent a natural or biological distinction but is, rather, an administrative category (Bogdan, 1980; Bogdan & Taylor, 1994; Braginsky & Braginsky, 1971; Ferguson, 1987; Goodley, 2000; Oliver, 1990). Where the boundary is drawn depends on the demands and norms of local contexts, and factors such as the organization of the economy, the educational system, and the provision of welfare services. Different cultures, therefore, define the condition and category differently, and the criteria for inclusion vary over time (Bogdan & Taylor, 1994). For those identified as having mild learning difficulties (or mild or borderline mental retardation), the same individuals might be included in the category in some cultures or at some points in time but not in others (Jenkins, 1998; MacMillan, Siperstein, & Gresham, 1996; Slone, Durrheim, Lachman, & Kaminer, 1998). For example, MacMillan et al. argued that the guidelines given by the American Association on Mental Retardation (Luckasson et al., 1992) increased the proportion of the United States population eligible for classification (on the basis of IQ alone and before adaptive functioning is taken into account) from 2 to 10 percent. This means that what people are denying, or not presenting as a central aspect of their identities, is not some incontrovertible fact about themselves, but actually a locally determined diagnostic and administrative construct. The way denial has been interpreted assumes that the name given by one collection of people to another has some primary ontological status. It is relevant here that it is the label itself that people are often reluctant to claim; as described above, people are often more willing to acknowledge the specific difficulties they have.

In the study presented here we examined in detail some of these problems from the perspective of people using services for people labeled as having “learning difficulties.” In particular, we aimed to illustrate how understanding the label in terms of social contexts and social categories can help to explain why people who have been labeled might not find the label to be a coherent or useful explanatory or descriptive resource in their everyday lives. Note that the focus here is not on how people describe their specific competencies but, rather, on the label and its social contexts.

Method

Participants

Participants were recruited from a local government day center and from two social clubs run by a voluntary organization. Both were located in the south of England and were exclusively for adults labeled as having learning difficulties. The clubs, which were part of a network supported by the largest charitable organization for people with learning difficulties in the United Kingdom (Mencap), offered evening activities, such as sports, dancing, art, and games. One club was based in a school and the other in a community hall. The day center was located in industrial buildings and offered vocational and educational group activities. All services included service users with high and low support needs.

Admission to the day center was on the basis of a psychologist's assessment of both IQ and functional abilities, although people may have progressed from a different service (e.g., school for children with special educational needs, residential hospital on its closure) to the day center without further assessment of their abilities having been made. Eligibility for membership of the social club was less formal and dependent on the person using some other recognized service for people with learning difficulties.

All members of these services who could communicate verbally with at least the words yes and no were invited to take part by the workers. In several cases this resulted in short interviews because we were not able to verify understanding through asking participants for examples or elaboration; two of these transcripts were omitted from the analysis. All participants were identified by service workers as having mild or moderate learning difficulties (the equivalent of mild or moderate mental retardation in the United States). The 36 participants included in the analysis lived either with their families, in group homes, or in hostels (one person lived in an independent apartment). Of those who did not live with their parents or siblings, all received support from paid staff. Fourteen participants had Down's syndrome. Daytime occupations ranged from attendance at segregated day centers, college courses (mostly segregated), staying at home, and doing voluntary and part-time work. Two people had full-time jobs. Participants were 14 men and 22 women, ranging in age from 18 to 65 years (M = 36.5). Twenty-nine of them participated in a second interview approximately one year later (7 of the original participants declined a second interview or had left the services).

Procedure

Semi-structured, conversational style interviews were carried out with participants in quiet areas of the day center or social club. All interviews were recorded and transcribed fully at a later date. The length of the interview varied, up to a maximum of 1 hour. In the first interview, participants were asked questions about themselves (e.g., Could you tell me a bit about yourself? Tell me five things about yourself. What are the good things about yourself? What are the bad things about yourself? What do other people think about you? How would they describe you?), their lives (e.g., Tell me a bit about your life. What do you do in the day? Where do you live?) and the other people in their social environments (e.g., Who are the important people in your life? Can you describe the other people who come to this club? Is there anyone you don't like? What makes a person good/bad? How do people treat you?). Questions aimed to elicit people's descriptions and opinions of themselves and other people they interacted with as well as their explanations for the events that they described. An informal, conversational-style of interviewing was adopted, which allowed probing and rephrasing. Questions were asked whenever possible within the stories or situations that the participant was describing at the time. For example, if someone was describing their job, the interviewer would ask them to describe what the other people there were like, or what the other workers thought about them. However, it was not always possible to embed questions in this way, and so some questions were introduced by the interviewer as if it were a more structured interview.

In the first set of interviews, the interviewer did not use any terms relating to the label unless the interviewee mentioned them first (this only occurred in 8 interviews). Approximately one year later, participants were invited to participate in a second interview; This began with feedback on the first interviews. General findings of the first study were described and the participants reminded of some the topics discussed in their first interview. The second interview contained a number of questions addressing definitions and use of the labels that had been most often employed by participants in the first interview: learning difficulties and handicapped (e.g., how participants understood the terms, whom they would describe in this way, how they would know if someone had learning difficulties, whether they would use the term to describe themselves). If other terms were introduced by the participant (e.g., backward, mentally handicapped), these were also used by the interviewer. Further, exploratory questions were asked.

Findings

In the first set of interviews, only 8 people used labels (4 with reference to themselves and 4 with reference to other people or services). In the second interviews, 13 people accepted at least one of the labels as personally applicable when asked directly, 13 rejected them, and 3 said they were unsure (for similar results, see Davies & Jenkins, 1997). Rather than attempting to summarize individuals' overall positions with respect to the label, the extracts below were selected to illustrate some of the problems in using the label as an everyday description or explanation. These themes were found in transcripts whether or not participants identified with the label and might, therefore, help to explain both why some people rejected the label and why others who accepted it might find the label inadequate in some contexts. In line with research on stigma, a few participants clearly expressed negative judgments of the label, either when describing the restrictions associated with disability or its use as a term of abuse. However, rather than taking stigma as a starting point and assuming that it is the primary determining factor in what participants say, even when they do not mention it explicitly, we have instead taken what participants said at face value. This approach reveals many other problems with the label that do not explicitly involve its negative associations. This is not to deny that self-esteem motivations or interactional issues are behind some of what participants say but is, rather, an attempt to bracket this assumption in order to allow a more complex picture of the label as a basis for identity. Note that given that identity claims are partly designed to deal with immediate interactional business (Antaki & Widdicombe, 1998), we do not assume that in other contexts participants would necessarily claim the same identities.

Uncertainty Over the Meaning of the Label and Who Should be Labeled

The range of labels used created problems for some participants. Although the terms learning disabilities and learning difficulties had been used interchangeably for over a decade in United Kingdom services, some people defined it only as indicating someone was learning (e.g., “Because to learning how to doing recording this”). Others identified themselves with terms that were not officially used any more (e.g., mentally handicapped, backward, Mongol) or in terms of the more general handicapped. A further group of participants identified only those with physical disabilities as handicapped (for similar findings, see S. Taylor, 2000).

According to staff and service providers, all users of the services in which the research was carried out had learning difficulties. However, in our interviews, only 8 people identified all service users as unquestionably having learning difficulties, 3 of whom excluded themselves on the basis that they were helpers. More commonly, those with clearly visible impairments were identified, with participants expressing uncertainty about whether the label should be applied to those who were more independent (discussed below). A few people articulated even more uncertainty over who should be labeled: Interviewer (I): “Do you know anybody who's got learning difficulties, do you think? Linda: “Um . . . I don't know really, who's got learning difficulties here, I don't know.”

Even people who identified with the label and described some of its implications expressed uncertainty about what it meant. For example, Sonia had said that the people she lived with called her names such as “mentally handicapped.” She was one of a small number of participants who openly applied the label to herself, saying it was a negative element in her identity that hindered her life.

I: Can you tell me what that means. . . . What is it?

Sonia: Well mentally handicapped is the, means the handicapped home. . . . That means I'm mentally handicapped and I'm a Mongol and Down's syndrome. . . . And I'm born like that.

I: Right, why were you born like that?

Sonia: I don't know.

I: Don't know. What is it, when someone's mentally handicapped, what is it all about?

Sonia: I don't know what it's about at all.

Later, Sonia said she did not like it because it stopped her doing things she wanted to do on her own, like using the buses, but when asked how she felt about it, said “I don't . . . I don't feel it at all.”

Definitions Focus on Those With Severe and Multiple Disabilities

People who have been labeled as having learning difficulties often identify others who are most visibly dependent when characterizing the category (Bogdan & Taylor, 1994; Davies & Jenkins, 1997; Koegel & Edgerton, 1984; J. L. Turner et al., 1984; Zetlin &Turner, 1984). In our interviews, participants tended to use “learning difficulties” and “handicap” to apply to others when they had physical disabilities, required a high degree of assistance (Nicola: “I have to help them, feed them”), had fits (Louise: “Sometimes they have fits, like that”), were unable to talk or understand, or displayed challenging behavior of some kind. Defining the category in this way, however, often made the label an unsatisfactory description of the speaker. Tony, for example, acknowledged that people call him “backwards” but rejected the term, citing as evidence his competence in his job:

Tony: Yeah, they say me learning di . . . have backwards, him learning difficulty.

I: Right

Tony: I not.

I: Right.

Tony: You see, I can make a proper, um, cook a dinner for anybody here.

I: Right, you cook dinner.

Tony: Yeah, I me do meals on wheels [a service whose personnel prepare and take meals to elderly people in the community] me doing.

I: Right,

Tony: And me do a hundred a day.

Similarly, Luke said that his mother thought he had a mental handicap, but he did not agree with her. Because he perceived those who were “outright” handicapped as very different from himself and some of his colleagues, he was uncertain how the label could be applied to him.

I: Do you think there's other people at the center, do you think there's people here who are mentally handicapped?

Luke: Yeah, some of them, yeah.

I: Some of them?

Luke: Pam Rearden, I think she's mentally handicapped. . . . She doesn't speak. . . . I think she's mentally handicapped . . . And fully outright . . . I mean handicapped outright . . . you know, outright well done . . . Outright, real, proper.

I: And is there anybody else who is properly mentally handicapped here?

Luke: I say Lynette.. . . Lynette can't, doesn't walk very well.

I: Oh right, right, so do you think that some people are outright mentally handicapped and some people are just a little bit, or is it some people here aren't handicapped at all?

Luke: They're made different, see?

Luke was not only reluctant to accept the label for himself but also clearly identified some other service users as not being handicapped (for similar examples, see Bogdan & Taylor, 1994):

I: Do you think there are some people at the center who are not handicapped at all?

Luke: I would say Nathan (participant) is not, Grace (participant) is no. I would say Simon is handicapped.

I: Why is he handicapped?

Luke: Probably mentally

I: How do you know that?

Luke: He can't hear, he can use sign language and that. . . . He can talk but he don't understand.

I: Oh right

Luke: That's why he's handicapped.

Alternative Categorizations

In the state schools described by Murphy and Burt (Bogdan & Taylor, 1994), people with extensive support needs were referred to as “low grades,” and this categorization was reinforced in physical space by their accommodation in comparison to those considered to be more able. Many of the participants in our interviews talked about providing assistance to other service users who could not do as much as they could (see also Rapley et al., 1998), and they often represented those people as in some ways a separate group from those who were more independent (for a full analysis, see Finlay & Lyons, 2000; for further examples, see Zetlin & Turner, 1984).

I: Do you think you're the same as everybody here?

Grace: Well I can talk and some of them can't talk.

I: Right, in that sense there's a difference.

Grace: Different to two levels.

I: And is there any other way that you're different?

Grace: We can help ourselves, like Deborah and Nigel, they can't . . . they need help.

These alternative ways of dividing people into groups are no less veridical than dividing people into those who have learning difficulties and those who do not. Social psychologists who examine social and self-categorization stress that no single way of categorizing the social environment should be seen as primary. Rather, self-categorization is variable, flexible, and context dependent and needs to be understood as an interaction between the perceiver and the social environment (J. C. Turner, Hogg, Oakes, Reicher, & Wetherell, 1987).

These distinctions were reinforced in the services in which the research was conducted, whereby those who were most independent were often described as volunteers or helpers and expected to assist others who were less independent, at the same time as being identified as having learning difficulties (see Bogdan & Taylor, 1994, for examples of this in state institutions in the United States). Both Tony and William were described to the interviewer by those who ran one of the social clubs in terms of these dual identities, and their comments reflected this:

I: So do you think that most people here have learning difficulties?

Tony: Um, most of them have learning difficulties and some of them who is here can't help people is here, we help them a lot. They no understand.

I: Some people talked about learning difficulties and handicap a bit. What does that mean for you?

William: It's just that they can't really . . . they're not like us. We can get around. . . . We've got to help them. . . . Learning difficulties, they can't really sort of, like, they can't do much, they can't get out what we can do. . . . And they can't travel all that much, and they've got to have staff come and take them.

I: So do you have learning difficulties?

William: No, I don't have learning difficulties. I only just get in to help them.

Defining the Category in Terms of Service Use

Without the psychological technology on which classification is based, and given that obvious markers of category membership do not exist for those people who are more independent, in many cases the social category can be most clearly identified in terms of service use (Davies, 1998), the occupation of particular spaces (Danforth & Navarro, 1998), and the power relations between service workers as a category and service-users. In the interviews, participants most commonly described others who had been labeled as “friends” or as users of similar services to themselves (clients, residents, group members). Only rarely did they use labels, although this was more common when people had visible physical disabilities, in which case they were often referred to as “handicapped” (for similar findings see S. Taylor, 2000). When a label was used, it was often explained with reference to service use:

I: What about the people you live with, your friends, what sort of people are they?

Nina: Oh, that's um, well, menicap people.

I: And what does that mean?

Nina: Um, just like . . . they're residents.

Bob used a similar description:

I: You told me in the last interview you were handicapped.

Bob: I am handicapped.

I: In what way are you handicapped?

Bob: Go up the center, handicapped people's center where learn woodwork. Do we make things.

Sonia, who had complained that her friends called her names, did the same:

I: Do you think the other people you live with, do you think that they're mentally handicapped or not?

Sonia: They are as well.

I: They are? So why do they call you that if they are as well?

Sonia: I don't know . . . it's a mentally handicapped home.

References to services were also made to explain why others might label the interviewee:

I: What names do they call you?

Gary: Backward and all kinds, you know.

I: So why do they call you backward?

G: Well I used to go to [special school], you know.

Nathan: I think that's why we come here, coz' we're handicapped, this center's for handicapped isn't it?

The Possibility of Leaving the Category

Defining the category in terms of service use, however, means that people may leave the social category, and thus the label, when they lose contact with services. This is not to say that they do not encounter difficulties nor that they themselves or others might not see them as slow or different in some way (e.g., Koegel & Edgerton, 1984), but in terms of the social category and its characteristic social contexts, to some extent they have left. In services there is often a philosophy of learning skills relevant to a range of independent statuses and expectations that people are working towards employment or increasing independence in accommodation. There is, therefore, an implicit suggestion that people are working towards some kind of social exit. Gary and Tony (see extract above) both offered the fact that they had jobs as evidence that they did not have learning difficulties (see also Zetlin & Turner, 1984). A further example is provided by Sonia again. She acknowledged the stigma associated with the label while admitting it applied to her (see above). However, the potential to leave the category (albeit in a rather ill-defined way) also existed:

I: What do people think of mentally handicapped people?

Sonia: They don't like it.

I: Really?

Sonia: My friends don't like it.

I: Why don't they like it?

Sonia: Because they're trying to get me out of it.

I: Really? Trying to get you out of it? And how could you get out of it, do you think?

Sonia: Like to get a job and things like that.

I: Oh right.

Sonia: Get me out of trouble and that.

Gary, who had paid employment and did not attend the local day services but who continued to go to the social club, also described this possibility:

I: Do you know anybody who has got learning difficulties?

Gary: Um . . . no not now, but there's some sort theirself out, after what I've done, I've been watching them, they said can you do it, I said yeah, know I can do it. Now they got married.

I: Did they have learning difficulties?

Gary: Yeah they did.

I: Do you think they've got them now? They've still got them or not?

Gary: I think they managed to sort theirself out a bit.

I: Did they?

Gary: Yeah, Sharon married Dave, he's working now.

Labeling Varies Over Contexts

Problems with category boundaries are further illustrated in the fact that at any particular time, some people may be recognized as having learning difficulties in some contexts but not in others (for a review, see MacMillan et al., 1996). People might be labeled in school or services, but their families, friends, or neighbors might not think the label is right for them (e.g., the 6 hour retarded child—see Bogdan & Taylor, 1994; Edgerton, 1979; Koegel & Edgerton, 1982; for a study of an individual family, see S. Taylor, 2000), and service workers might be unsure whether a proportion of clients they support do have learning difficulties or not. Indeed, Koegel and Edgerton (1982) have illustrated how many parents of their sample of young black adults who had been labeled as having mental retardation rejected this label while acknowledging that their sons or daughters had certain limitations or were “slow.” In our interviews, Grace illustrated this point:

I: So, do you think that you've got learning difficulties or not?

Grace: Coz' my mum thinks I'm about, I'm normal.

I: Yeah and what do you think?

Grace: I am normal.

I: Right, and did anybody ever say, or has anybody ever said that you had learning difficulties?

Grace: They thought that I was handicapped, but when I was assessed from another [service] they found out that I wasn't.

Grace's mother did indeed confirm that she considered Grace to be “near normal” (a view she said was shared by others in the neighborhood) and not at all like the other users of the day center (for a further example, see Jahoda et al., 1988).

Labels Can be Used as Insults and to Imply Essential Difference

Stigma was an issue that was explicitly oriented to by some participants in their discussions of the label. In these cases, the use of the label in a particular context, and the local implications of this usage, was rejected. For example, Nathan described how people sometimes called him and his friends names (Mongol/handicapped) in the street:

I: When you go out on your own, and there's people who don't know you, what do you think they think about you?

Nathan: They laugh at me . . . they call me names.

I: What names do they call you?

Nathan: Mongol . . . but that's not nice coz' no-one's perfect are they? . . . I say not even you. There's a lot of things you need help on. No one's perfect, not even Jim the manager (of the day center), he's not perfect, he has some help. . . . But one thing I used to do, I used get upset and not say nothing but now I have to do that, I have to say things and get myself worked. . . . I have to, I have to tell them I don't like it.

I: Right.

Nathan: You know I don't like you calling me names, and if you don't like me then don't come here.

I: Right, sure.

Nathan: Know what I'm saying to you?

I: Right I understand.

Nathan: Say if you don't like me, if you don't like coming here, then don't talk to me.

I: Sure.

Nathan: Because you're not perfect either.

Nathan rejects the value judgments implied when such labels are used as insults in the street. However, throughout the interviews he accepted the term handicapped and was open about the difficulties he had in his life and his relative lack of skills in certain areas. What he was rejecting, then, was not an assessment of his level of competence. Rather, it was the insult and the discrimination that are part of the label when it is hurled by youths in the street and the implication that a lack of competence is a reasonable basis for defining him as “other.” Nathan did not accept that he was any worse than they were nor that there was any real difference between himself and people who were not labeled (for similar examples, see Goodley, 2000; Jahoda et al., 1988; Zetlin & Turner, 1984).

Similar points were made strongly by Murphy in his autobiography (cited in Bogdan & Taylor, 1994), who described how the power of the label to determine perceptions is so strong it prevents people seeing the individual. He rejects the label “mental retardation” because of the incorrect, negative assumptions people make when they hear the term and the social rejection that follows, and it is in this sense that the concept of stigma is useful. Similarly to Nathan, this is not a denial of his own particular difficulties, which he describes in detail, but is, rather, a rejection of the stereotypes he knows are in the minds of the general public and that are reflected in the restrictive and discriminatory practices he has experienced in the service system. The point here is that to understand denial, we must understand exactly what version of the label is being denied and not assume the meaning of the label in everyday discourse is that given in professional texts. To reject the term when it is hurled in abuse, or used as a basis for denying people equal rights, does not mean that one is denying one's levels of competence. What one is rejecting in the former context is the everyday meanings of the term on the street, that the recipient of the term is less worthy, is essentially different, and can be treated with disrespect.

Discussion

The interviews revealed a number of problems with the label when used to describe the everyday social contexts of the participants, only some of which were concerned with the stigma or restrictions associated with disability. First, participants often expressed uncertainty over who in their environments should be labeled, tending to identify those with the most visible impairments. This was sometimes associated with uncertainty over what the labels actually meant. This is understandable because the criteria used to label people, and the techniques used to assess them (intelligence tests, adaptive behavior scales), are in the hands of educational and psychological professionals. People labeled as having learning difficulties, and others in their immediate environment, usually have no access to them. The sort of distinctions in IQs that would put people on either side of the boundary for eligibility are not easy to detect without special tests, and many areas of adaptive functioning are not obvious to the casual observer (although see Davies, 1998). More easily observable characteristics, which may include physical or sensory impairments, may also be misleading (see Rubin et al., 2001). The lack of clearly visible criteria that would distinguish a category member from others (Bogdan & Taylor, 1994) is exacerbated by the reluctance of some families and service providers to openly discuss issues of labeling with those whom they have labeled (for examples, see Craig et al., 2002; Davies & Jenkins, 1997; Stimson, 2001; Todd, 1995; Todd & Shearn, 1997; Zetlin & Turner, 1984).

Without access to these debates and technologies, we might expect participants to look to other aspects of their social environments, in particular to the social category, its membership, and its characteristic environments, to determine the meaning and usefulness of the label. Participants in this study used two broad sources of information to identify people and to define the category: service use (discussed below) and the characteristics of individuals. With regards to the latter, participants worked up local definitions of labels by referring to visible impairments and high support needs. This can be explained in terms of more general processes of social categorization. In social psychology it is recognized that category prototypes are defined for functional purposes and vary according to the context in which they are spoken about (Reicher & Hopkins, 2001). When the purpose is to differentiate a category from others, those members who most clearly diverge from alternative categories (i.e., those with the most severe impairments) might become representative of the category. However, this means that the membership of those who are more independent, or who do not have visible impairments, becomes problematic because they do not fit easily into these category definitions.

Looking for visibly shared characteristics also makes it difficult to represent people with the label as a single social category. Those who have been labeled differ widely in their abilities; whereas some have difficulties in adaptive behavior across most spheres of life, others have difficulties only in limited areas, and these may be apparent only in specific contexts. Indeed, heterogeneity is acknowledged as crucial in government guidance on service provision, and some commentators have suggested that imposing a single label on such a heterogeneous group is unhelpful (Bogdan & Taylor, 1994; Braginsky & Braginsky, 1971; Dunne & McCloone, 1988; Gelb, 1997; MacMillan et al., 1995, 1996; Smith, 2002).

Because it is difficult to identify characteristics that members share that are not external in origin (e.g., being labeled and grouped by services) and that are not also found in many people not labeled in this way (such as the need for support in some areas of life), it is rather difficult to represent members as sharing a common identity (Bogdan, 1980; Bogdan & Taylor, 1994; Davies, 1998). As a result, alternative categorizations, based on attributes that have more relevance for day-to-day life in services (e.g., challenging behavior or ability to talk) or that are more visible (e.g., physical impairments), may be more apparent (Finlay & Lyons, 2000). Indeed, these alternative categorizations are reinforced by the fact that many of the participants had roles (official and unofficial) in helping those with more severe impairments.

An alternative indicator of category membership is service use, and many of the participants referred to this when describing the category. However, many services explicitly or implicitly work towards the goal of increasing independence from services and increasing nonsegregated community participation. When people get jobs, have children, or get married, they often move to other systems of support that are less clearly defined or visible as services for people with learning difficulties. Studies of people in the community have linked a diminished concern with labels with decreasing involvement with specialist services (Booth & Booth, 1994; Edgerton & Bercovici, 1976; S. Taylor, 2000). If an indicator of the label is use of specialized services, or the use of particular social spaces, detachment from services, then, can be seen as detachment from the label, and this possibility was alluded to by several participants. If this is possible, and participants have known people who have moved on in this way, it in turn undermines the idea that the label is fixed or essential and, therefore, that it can constitute a central definition of the person. It also sets up further ways in which the category can be divided among people who may, in varying degrees, leave the social settings and power relations associated with category membership, and those who are less likely to leave. Indeed, the International Classification of Diseases, 10th revision—ICD-10 (World Health Organization, 1993) hinted that leaving the label behind might be possible in its description of mental retardation: “Intellectual abilities and social adaptation may change over time and, however poor, may improve as a result of training and rehabilitation. Diagnosis should be based on current levels of functioning” (p. 259).

A further factor suggesting that the label is problematic as an identity was that whether a person was defined in these terms sometimes varied over context. The parents of 2 participants told us that they believed their adult son and daughter did not really have learning difficulties and that they were different from the other service users. This is to be expected, because limitations in adaptive functioning can only be judged against the norms for particular sociocultural backgrounds, which are likely to vary within and between societies (American Psychiatric Association, 1995; Jenkins, 1998). It is worth quoting the ICD-10 (World Health Organization, 1993) again:

Detailed clinical diagnostic criteria that can be used internationally for research cannot be specified for mental retardation in the same way as they can for most of the other disorders in Chapter V (F). This is because the two main components of mental retardation, namely low cognitive ability and diminished social competence, are profoundly affected by social and cultural influences in the way that they become manifest. (p. 261)

Although this description refers to differences between cultures, we note that local or national cultures are also usually not homogeneous, and the norms professionals use to judge people against may differ from the norms and expectations of the subcultures and families that the person who is assessed comes from (see S. Taylor, 2000, for a vivid example of this).

Finally, stigma was found to be important to some participants. Here, rejection of the label was specifically a rejection of the label as an insult and as a basis of devalued treatment; it was not a denial of the individuals' need for support or their levels of competency. To understand this, a distinction needs to be made between a label that aims to provide a shorthand summary of a person's pattern of competencies and the nonprofessional, everyday use of labels, which involve “moral distinctions about what sorts of people are valued and not valued in a given society” (Danforth & Navarro, 1998, p. 42). Rejecting labels when used in these contexts does not involve the denial of some truth about the person, but instead involves pointing out that there is no simple discontinuity between those with and without the label, such that individuals can be easily assigned to one group or the other and, once assigned, denied the dignity and rights enjoyed by the majority (Bogdan & Taylor, 1994; Danforth & Navarro, 1998; Gelb, 1997).

In summary, some participants saw particular labels in negative terms, either because they were used as insults or because it meant that their independence was limited. However, there were a range of other problems with labels that made the participants reluctant to use them as self-descriptions. These alternative explanations become apparent if we understand labels in terms of context-based social categories rather than psychological conditions. The category is not homogeneous; it has few visible, publicly available criteria for membership; it has fuzzy edges and permeable boundaries; and the traits that distinguish it most from the rest of society only apply to some of its members. Additional problems with using the category in everyday contexts need to be mentioned. The label offers a crude, blanket explanation for many behaviors, attributes, and situations that are actually multiply determined and may be better explained either as responses to oppressive social environments (e.g., Bogdan & Taylor, 1994; Booth & Booth, 1994; Goodley, 2000, 2001) or in more mundane ways. People may also behave in ways, or lead lives, that contradict the label or its public representations (e.g., Finlay, Rutland, & Shotton, 2003; Rapley et al., 1998); they may care for others or contribute materially to the community in other ways (Walmsley, 1993). In all these circumstances people may deny or ignore the label not because it has negative implications for their self-esteem but because it is not a useful explanatory construct or a meaningful description of themselves or their social environment. These alternative explanations should at least caution researchers from assuming that people who do not identify with the label are either displaying a failure to adjust or a lack of insight. Where the concept of stigma was illustrated was in the idea that when people in the general public use the label, they are assuming erroneous negative stereotypes of people on the basis of the label, judgments that have important social implications, and it is these judgments that are being rejected rather than the fact that a person has particular needs.

In this paper we have limited the focus to the label as a social category; the ways in which people negotiate and understand particular lack of competencies in their lives was not addressed. This is richly described by Edgerton (1993) and further work in this area would be useful. Identities and representations are complex, and there are other factors involved in rejecting the label than those outlined here. One that deserves further attention is the possibility that denial can be an interactional strategy designed to avoid difficult interactions with those who have not been labeled. This has been described in relation to partial sightedness by French (1993) and is directed at avoiding the discomfort, guilt, or misunderstandings of other people. It is likely that this is also a factor for people labeled as having learning difficulties, particularly because people's difficulties may not be immediately apparent.

We have focused on important, but limited, aspects of the social environment. In other ways, particularly in terms of oppressive power structures and discourses, the label becomes a more meaningful and useful construct, and writers on disability have pointed out that that this may be the basis for common identity (e.g., Finkelstein, 1993; Gordon & Rosenblum, 2001). The broader political aims of the self-advocacy movement require collective identity, and this may include use of labels for the purposes of campaigning and political critiques (e.g., Aspis, 1997; People First, 1994, 1996). The availability of different discourses about disability is a particular issue for people with this label. There are two reasons for this difficulty, both of which relate to Corker's (1998) suggestion that the groups that are most marginalized from both the dominant culture and the disabled people's movement are those for whom language is critical. The first is the difficulty in symbolic language and conceptual understanding that people may have; the second is the control that other people often exert over the lives of people with learning difficulties and the mediating role they often play in the passage of information (Stimson, 2001; Todd & Shearn, 1997). This points to the importance of professionals and families being open and clear about labels, their meanings, and their implications from as early an age as possible. To avoid the issue is to disempower those who have received the label, because they are left in a less knowledgeable position with regard to how social forces might be affecting their lives (Davies & Jenkins, 1997).

In this paper we have suggested an alternative understanding of why people may not self-label, which does not involve the assumption of self-esteem protection. Although for some people this motivation is likely to be a factor, to suggest that the most important aspect of the label is its negative public evaluation is to grossly oversimplify the issue. Instead, we think that lack of personal identification with the label is related to the nature of the label as a social construction, which maps awkwardly onto personal experience and social arrangements in spite of the ways in which it is reified by institutional provision and common discourse. Information on one's identity comes from many places, and it would be unreasonable to expect people to represent themselves on the basis of a single, abstract label when lived experience shows that label to be partial, unclear, without standard concrete referents, temporary, and internally inconsistent. Other information on identity is equally important. Not only do these sources provide other foci for identity, but they often provide images of the self that contradict official or stereotypical versions of the category or the individual.

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Author notes

Authors:W. M. L. Finlay, PhD, Lecturer (w.finlay@surrey.ac.uk), and E. Lyons, PhD, Senior Lecturer, University of Surrey, Guildford, Surrey GU2 5XH, United Kingdom