Social Construction, Mental Retardation, and the Stories People Tell: An Essay and Review of The Social Construction of Intellectual Disability by Mark Rapley, Cambridge, United Kingdom: Cambridge University Press, 2004
What does it mean to say that something is socially constructed, and how does one demonstrate the social construction of that thing? The concept of socially constructed reality is usually attributed to Berger and Luckmann's (1966) theory of the production and institutionalization of knowledge—or the notion that a society builds widespread agreement about what is real through social negotiations that produce truths that then become crystallized into the fabric of everyday life and thought. In Berger and Luckmann's version of social construction, knowing that something is real or true and then acting on that knowledge serves to reproduce its realness. What is known as real is always fertilizing and cloning itself.
When applied to mental retardation, this theory suggests that the concept of mental retardation is firmly instituted within society and is continually reinforced (or reproduced) each time it is assumed to be real and true and is referred to as such. Within this theory, any private or public activity associated with mental retardation reproduces its associated meanings (e.g., medical or educational prognoses based on the dominant assumptions about what is possible for people with mental retardation, the use of the epithet “retard,” talking about “stages of grief” with parents whose child has mental retardation). Each of the above activities simultaneously emerges from beliefs about what is true about mental retardation and reinforces the social meanings associated with it. Although such activities often appear to be private matters for families making life's difficult decisions, they also are the result of and contributions to the broad social conversation about mental retardation.
As a structural account of social construction, re/production theorists have a tendency to assume there is an underlying logic to social construction and that it can be discovered through careful analysis of human activities, such as decisions about amniocentesis and abortion or special education. A structuralist account of reality is, generally, an omniscient account or one in which reality can be reduced to its logical relationships. Its proponents look for things to make sense in the way it makes sense to most if not all people in society. In the field of mental retardation, a structuralist might argue that truths about the social construction of mental retardation lie in what is known (or believed to be true) about related ideas (e.g., intelligence, the brain, genetics, academic achievement, adaptive behavior, normality, activities of daily living). Taken together, these might constitute the logical underpinnings of the concept of mental retardation.
Poststructuralists also make social construction claims and tend to uncover, or deconstruct, structuralist account of things. For example, Foucault has illustrated the historical use of social institutions to control people considered sick (medicine as an institution, Foucalt, 1975), mad (psychiatry as an institution, Foucault, 1965), and dangerous (the prison as an institution, Foucault, 1977). Space prohibits the depth of discussion Foucault's theoretical contributions deserve; however, in each of the above examples, he demonstrated the ways in which social institutions persuade, even coerce, people to cooperate with their aims. Applied to mental retardation, the Foucauldian account of social construction might hold that what is believed to be true about the brain, normality, intelligence, and so on, are peripherally related to the construction of mental retardation. Rather, the needs of the institutions that are in the “mental retardation business” and the needs of the broader society as a whole are what constitute mental retardation. Normality, intelligence, and other concepts are used as tools to do the work of institutional power. By this account, one might say that segregated special education for students labeled as having mental retardation serves the needs of society and education as a social institution, where those needs are determined by the institution as an arm of the broader society. Applying this explanation, one might argue that segregation makes the regular classroom more manageable; it makes curriculum work less challenging and less likely to be “watered down”; it keeps the regular classroom student population more “normal” and less “deviant”; it creates a “safe environment” for students who need “special help” and who “can't cope” with the demands of the regular classroom; and it minimizes the number of parent complaints about their children being in class with “those kids.” What is to be said about the parents of children labeled as having mental retardation who agree to and even advocate for a separate educational program? A Foucauldian argument might hold that they provide evidence of the power of social institutions to persuade parents that what is being done is “good for their children.”
Discourse and the Construction of Reality
Rapley, a discursive psychologist and author of The Social Construction of Intellectual Disability (2004), refers to re/production theory and Foucault's theory of power relations as well as discourse theory in his work. For Rapley, discourse refers concretely to what he calls “talk-in-interaction” and official texts (e.g., psychological reports, interview transcripts, policy statements). Others have used discourse to refer more abstractly to text as a metaphor for the stories of our lives. For example, there is Derrida's (1970) famous claim that “there is nothing outside the text,” by which he means that everything we know, think, or do constitutes our world (our text) and although those constitutions are unstable (as are all social constructions), they are, incontrovertibly, our own and there is nothing else but our own constitutions.
The usefulness of discourse theory is that its proponents tend to accommodate the complex negotiations involved in the social construction of mental retardation. Through a discursive analysis, one searches out the nuances and invisible dynamics of human responses to social challenges. In the case of mental retardation and the previous examples, these dynamics could involve the social class issues behind difficult decisions like inclusion, the cultural orientations of the parents or guardians, the social structures supporting or sabotaging inclusion, the type and degree of resistance on the part of educational stakeholders, the age or education or health of the parents (contributing to their in/ability to advocate for inclusion), and the economic resources available to families (e.g., being able to take time off work to attend meetings, being able to afford an attorney for due process hearings).
Official Text as Discourse
Rapley's notion of discourse as official text springs to life in his analysis of the various definitions of mental retardation. His quotes from the most recent American Association on Mental Retardation—AAMR definition (Luckasson et al., 2002) serve as examples of the social construction of mental retardation. How, for example, have the key concepts in this definition been defined and by whom (e.g., significant, limitations, intellectual, adaptive)?
Mental retardation is . . . characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills (p. 13).
He notes that the AAMR continues its definition by listing five assumptions, three of which include the concept of “limitation,” and one that claims that with “appropriate personalized supports over a sustained period . . . the person with mental retardation generally will improve” (p. 13). Later, Rapley quotes the AAMR claims that
mental retardation is not something you have, like blue eyes or a bad heart. Nor is it something you are, like being short or thin. It is not a medical disorder . . . nor is it a mental disorder. . . . Mental retardation refers to a particular state of functioning that begins in childhood, is multidimensional, and is affected positively by individualized supports. (p. 48)
Although earlier quotes from the AAMR are questionable from a social constructivist perspective, this last one seems to be the most problematic and slippery, and Rapley bores through it, arguing that the AAMR's position “reduce[s] the official definition of the term ‘mental retardation’ to nothing other than its everyday, vernacular, meaning (stupid, dumb, country simple, daft, not very bright. . . a retard)” (p. 41). He suggests that such definitions are hypothetical constructs “coined at specific times for specific purposes, and . . . abandoned when their usefulness expire[s]” (p. 41). Furthermore, he adds, the AAMR position is a social judgment “consequent upon enactment of certain social processes mediated by certain specific bodies of knowledge” without a “pathognomic, objective, physiochemical test” (p. 42). Finally, the circular logic of the position is revealed. “How do you know that someone is intellectually disabled?” Rapley asks. “Because they are incompetent and stupid, according to our psychometric tests,” he responds. “Why are they incompetent and stupid, according to our psychometric tests?” he asks again. “Because they are intellectually disabled” (p. 42).
Although Rapley devotes most of his attention to the AAMR position on mental retardation, he uses other official texts to illustrate similar claims, including those from the International Classification of Diseases-10—ICD-10 (World Health Organization, 1992), and the Diagnostic and Statistical Manual, 4th Rev.—DSM-IV (American Psychiatric Association, 1994). What stands out when comparing the various official texts is that, regardless of their apparent differences, they are all so similar in their underlying assumptions; even the AAMR position which, at the time of its revision in 2002, was heralded by many of my colleagues as a vast, humanistic improvement over previous iterations.
The structural, poststructural, and discursive interpretations of social constructionism become illuminated in Rapley's analysis. Use of the AAMR position and the various theories of social constructionism in the previous section make interpretive possibilities evident. Going all the way back to Berger and Luckmann (1966), and many theorists since, the production and reproduction of mental retardation is evident in the AAMR's official text and its applications. It drives the technology for identifying, diagnosing, classifying, and programming decisions for a wide range of social institutions. The language used by the AAMR in defining mental retardation is the language used by professionals. It is what parents and people labeled as having mental retardation hear when they go to meetings with psychologists, special education teachers, and social workers. It is found in the reports written by professionals and read by their colleagues and the consumers of their services. Each time the AAMR language, diagnostic recommendations, and classifications are used, the truth or reality about mental retardation is reproduced: that it is the result of functional limitations, that there are valid assessments for it, that individualized supports are needed for the limitations, and that “with personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve” (Luckasson et al., 2002, p. 13). Unfortunately, Rapley notes, even asking about the definition of mental retardation reproduces mental retardation.
What might a Foucauldian analysis yield? Several possibilities come to mind—all too simply put for lack of space. First, that the power wielded by the AAMR and similar official organizations is significant enough to create an almost insurmountable barrier to resistance. The buy-in of social institutions (e.g., schools, mental health agencies) is great. Once a child is suspected of “having” mental retardation and the referral and assessment balls get rolling, it is nearly impossible to stop the labeling process and, if possible at all, it is certainly unlikely. Even if a child is found ineligible for special education under the category “mental retardation” or any of its concomitants (e.g., cognitive impairment, intellectual disability), the memory of the referral hangs in the air, and the child is stigmatized as, if not having mental retardation, then at least a “slow learner.” What about the parents who, as noted in the earlier section, were convinced that a segregated placement is “for the best”? Would they likely be able to resist the power of the institutionalized definition(s) of mental retardation? Might they refuse a label and the special education services that go with it? They might try, but it is unlikely that they will succeed in the end. It is in the best interest of the educational institution to attach the label. Too many things depend on classifying students: federal and state funding, hiring special education teachers, class size (in some districts), paraprofessional assistance (in some districts), and so on. From a Foucauldian perspective, one might say that resistance is futile.
Talk-in-Interaction as Discourse
The beauty and power of Rapley's book is in the chapters in which he conducts his conversation analysis, and there is where Rapley's theoretical framework (discursive psychology and the social model of disability) and methodology (ethnomethodology and conversation analysis) become most useful. There, too, is where he answers the latter part of the question at the beginning of this essay: How does one demonstrate the social construction of a thing? In an effort to demonstrate the textual construction of reality, numerous texts have been deconstructed by many scholars. Rapley, himself, deconstructs the AAMR's official text. Yet, too seldom does someone provide evidence of social construction as it emerges from the everyday lives and talk of those individuals about whom scholars make constructionist claims. Through what one must assume are hundreds of hours of audio tapes, Rapley provides real evidence of social construction at work, and he does so while deconstructing several instantiated beliefs (myths?) or assumptions about people labeled with mental retardation that are enacted in talk. Rapley's participants are not passive recipients of the effects of social construction. Rather, they resist at every turn, changing the subject, confronting power relations, rejecting others' truths, asserting their own ideas, and doing so with great subtlety and charm. The embodiment of resistance in Rapley's data represents the beauty of the discursive method's ability to illustrate the negotiation of meaning.
The first assumption, acquiescence bias, refers to the belief that when questioned, people labeled with mental retardation are predisposed to say yes or no to answer in a way that they believe the examiner prefers. The professional literature on this assumption dates back to Binet's (1905) notion of “suggestibility,” or the notion that examiners might unconsciously suggest certain responses and that clients might feel “forced to give an absurd reply” (as quoted in Rapley, p. 81). Contemporary assumptions about acquiescence hold that people labeled as having mental retardation are likely to say yes when in doubt of an answer. Thus, special education teachers are trained to ask a variety of simple yes/no questions of a student labeled as having mental retardation in order to determine whether or not the student actually knows the answer or has a definite preference if a choice is given. The belief in acquiescence bias causes professionals to be skeptical of what people labeled with mental retardation have to say. Rapley points out that, of course, even people considered to be highly intelligent will agree with someone who holds authority over them, and, thus, sometimes Rapley's subjects appear to do the same when observed from the standpoint of acquiescence bias.
To deconstruct this assumption, Rapley uses transcriptions from examinations or one-on-one testing situations. In one of these, an examiner attempts to put Arthur (the person labeled as having mental retardation) at ease by telling him that to you “there's [sic] no wrong answers” (p. 90). Arthur—cunning and not persuaded—demonstrates his skepticism in numerous ways. Through a series of excerpts from various subjects, Rapley demonstrates that, rather than acquiescence, his clients are “pseudo-acquiescing” in several different ways: (a) reformulating responses, (b) “shepherding” to a correct answer (offering answers that appear contradictory to the examiner but are not actually contradictory), (c) shepherding to a competent official answer (reformulating answers until the examiner is satisfied), (d) echoing and background responses (active listening devices, for example, yes to indicate the listener is attentive to the speaker). Rapley also notes that subjects demonstrate active resistance through the use of negative responses and attempts to change the direction of the questioning.
For me, reading Rapley's transcription excerpts is like reliving moments in my life with my now adult children. Irony, or the witty use of language for the purpose of insult, is seldom considered a humorous tool of people believed to have significant cognitive limitations. Yet, when my oldest daughter, labeled with “profound mental retardation” (IQ 26) was a teenager, she often used irony to register her opinion when questioned, usually in response to something said about a sibling with which she disagreed. For example: Me to daughter: “Just look at your brother. Doesn't he look handsome?” Daughter to me: “Yeah right” (ironic intonation included).
The second assumption holds that people labeled—particularly those labeled as having moderate, severe, or profound mental retardation—are unclear or unaware of their marginal identity. Rapley indicates that this assumption goes to the question of self-identity and the belief that people considered to have significant cognitive limitations are not able to be self-aware nor are they able to recognize what others think of them.
Rapley speaks directly about Edgerton's Cloak of Competence (1967/1993). Rather than finding his subjects in denial, unaware, or pretending to be competent, Rapley finds them actively engaged in identity management through “mobilising relations with others” (e.g., acknowledging others' negative beliefs about disability, positioning those beliefs in a social context [pp. 120–130]) and “constructing alternative, ‘competent,’ identities” (e.g., describing oneself as a “typical worker,” making direct knowledge claims, intentionally associating or dissociating oneself with an organization, pp. 130–138).
Rapley's evidence in this chapter is disheartening. As the mother of three adult children labeled as having mental retardation from birth or an early age, I had hoped to see the sole parent represented in Rapley's data setting as a positive example. Instead, we read the following in which Kylie's “Mum” is talking to Anne, who is Kylie's direct care worker in a group home. Mum is concerned about a requirement that Kylie be the person to make contact with Centrelink and complete the forms the centre requires. Kylie is labeled as having moderate intellectual disabilities and is nearby and within earshot. Activ is the provider organization.
Mum: I mean they know that these kids are Activ kids. They must know they are retarded.
Anne: Yeah well.
Mum: And any message you give them is goin to be totally misconstrued you know.
Anne: Oh no, Kylie did all the right things.
Mum: Yeah. (p. 116)
Rapley's criticism of this excerpt is both with Mum's reference to Kylie as “retarded,” as not competent to handle the conversation with the bureaucracy office. The reference, “these kids are Activ kids,” emphasizes that Mum believes Kylie is not competent to handle the situation. In the next excerpt from this conversation, Mum digs in even further. Mum: “The Centrelink think that the kids are actually going to grow brains overnight and be perfect. Again I mean I wish that was the case.”
Rapley also criticizes Mum's use of “kids” to refer to Kylie and her group home roommates, and this is one of only two criticisms I have of Rapley's book. As I was reading this very passage, I was visiting my elderly father, himself the parent of four grown children with children of their own. We were with friends of his, also elderly and parents of grown children with children. In talking about my siblings and me, my father referred to us as “the kids.” His friend laughed and replied, “Yes, as long as we're alive they'll be our kids.” Only one of the “kids” to whom these men referred had disabilities, and none were labeled as having mental retardation. I, too, refer to my three grown children as “kids” and once received criticism for doing so because they have disabilities. Many, if not most people I know who have more than one or two children refer to them as “kids” even when they are adults.
This scenario makes an important analytic point. It is all too easy to apply standards to parents of children or adults with disabilities that are not applied to the researchers or to most other parents. In analyzing talk-in-interaction, Rapley and his readers all should be aware of what the philosopher Umberto Eco said in The Limits of Interpretation (1990), where he argued that there are no limits to interpretation—there are unlimited meanings— while at the same time common sense readings must be done. “The interpreter must first of all take for granted a zero-degree meaning, the one authorized by the dullest and the simplest of the existing dictionaries. . . . the one that every member of a community of healthy native speakers cannot deny” (p. 36).
Again, reading Rapley's excerpts is like reading an autobiographical account of interaction with my own children. The following is an excerpt from a publication in which I described one such interaction with my oldest daughter, who demonstrated her own identity management. Note that she is believed to have an IQ of 26. In this conversation, she does not deny her impairments or functional limitations. She fully admits them. However, here she is either resisting being called “disabled” or she is resisting allowing me to call her “disabled,” which I take to be her attempts at identity management. Her tone of voice, with which she also communicates, is matter-of-factly rejecting my position.
Mom (on telephone): Yes, my daughter, T is disabled. Three of our children are disabled.
T (overhearing): No! Not me!
Mom: Why yes, T, you are disabled.
T: No! No!
Mom (after ending conversation on phone): T, it's OK to be disabled. A [sister] is disabled. B [brother] is disabled. Mom is disabled.
T: No. Not me.
Mom: Do you think there's something wrong with having a disability?
Mom: Do you agree that A [sister] has a disability?
Mom: Do you agree that B [brother] has a disability?
Mom: Do you agree that Mom has a disability?
Mom: Is it OK that we have disabilities?
Mom: Then, why isn't it OK for you to be disabled?
T: ‘Cuz, not. Not me!
Mom: Are you saying that you are not disabled?
T: Yes. Not.
Mom: Do you have spina bifida?
Mom: Do you use a wheelchair?
Mom: Is it really hard for you to read and count?
Mom: Do you sometimes have trouble saying your words?
Mom: Then that means that you are disabled.
T: No. Doesn't.
Mom: OK, T. I will have to agree. You are not disabled.
T: Good. (adapted from Gabel, 2002, pp. 180–181).
Third, Rapley addresses several assumptions in what he refers to as the practice of institutional talk (p. 143), which he describes as a sing-song tone with simple declarative statements that is so often used when talking to people labeled as having mental retardation. Rapley suggests that institutional talk sounds like the way adults talk to dogs and infants (Mitchell, 2001, cited in Rapley, p. 143). Here, I argue that the institutional talk to which Rapley refers is the result of the belief in mental age (MA) derived statistically by the results on intelligence tests. If one is believed to have the MA of a baby, it could follow that others would talk to that person as though talking to a baby.
Rapley categorizes institutional talk into three groups, in order of their frequency: babying/parenting, instruction giving, collaboration/pedagogy. The first two categories, in particular, are characterized by (a) asymmetrically distributed control over topic and topic shift, (b) asymmetries in turn length, (c) asymmetric rights to ask questions, (d) the adoption of simplified semantics and lexical choices by the “competent” interlocutor, and (e) a ‘sing-song’ intonation countour” (p. 143). It is here that power relations seem to be most apparent. Time and time again, direct care workers use talk to authorize themselves and marginalize people labeled as having mental retardation. One of my favorites occurs in the kitchen while Jim is preparing dinner. Jenny, his social trainer, is unaware of Jim's use of irony and goes on about her business of “protecting” Jim from a sharp knife. Readers of Rapley's book will find his analytic marks helpful in imagining the ironic tone of voice Jim uses when he reacts to Jenny's approach.
Jenny: Jim I think I might cut these.
Jim: Yes mum.
Jenny: Because this knife is dreadful and it isn't very sharp.
Jim: We'll have to buy more.
Jenny: And I'm just concerned that you might. . . [interrupted]
Jim: Buy a sharp knife at the shop.
Jenny: If you'd like to peel that for me.
Jim: Yes mum. (p. 161)
Once again, I am surprised at how autobiographical Rapley's accounts feel to me. Soon after reading his book, my youngest daughter, who is labeled as having mild mental retardation, had her 23rd birthday. She invited several friends (all adults labeled with mild or moderate mental retardation) to have dinner with her at a local restaurant. Most of her friends were accompanied by their direct care workers, for whom we created a separate table so that my daughter and her friends were not surrounded by people paid to be with them. The woman who owns the company that provides the staffing for my daughter prides herself in progressively believing in what our state calls “self-determination” and, admittedly, does a better job with it than any other agency we have found. This woman floated from table to table, assisting my daughter and others. At one point, I reflected on the ways in which the scene might be interpreted by Rapley, and I heard the sing-song baby-talk of her voice sprinkled with addresses like “honey” and “sweetie,” all of which she reserved strictly for those diners labeled as having mental retardation. Although I have heard her use this tone many times before, I have always let it go in an effort to pick my battles—but there are so many battles.
What To Do?
This example and Rapley's fine research demonstrate the insidiousness of the social construction of mental retardation. It seeps into our cultural pores. It becomes so much a part of the fabric of society that even those individuals attuned to social construction and disability rights cannot remain alert enough to recognize it in all its subtle forms. Nor is it possible to sustain the energy needed for the infinite battles to which I referred in the previous section.
Rapley ends by claiming that mental retardation is “a disreputable moral status socially constructed, by psy[chology], as a speakable truth about such persons” (p. 208). He suggests that we “do away with explanation and let description alone take its place” and that we “develop modes or practices of accurate description to replace morally laden, pre-emptive, evaluation” (p. 208). Here is my second criticism of Rapley's work—one that minimally affects his analysis and the way he represents his data but more fully affects some of his conclusions. He believes that accurate description unburdened by moral bias is possible. He demonstrates this through his method, whereby he meticulously notates his transcriptions to show his speakers' pauses, in-breaths, laughter within and outside words, cut-offs, intonations, volume, and so on. However, a speaker's long pause, for example, could mean any number of things in context: that the speaker is tired, lost his train of thought, is unsure of what he wants to say, is unsure of how to say something, is hoping the listener will interrupt him. Readers of his book will find these methods helpful at times (as, for example, when intonation rises with the use of irony), but for the most part, I approached them skeptically because this form of analysis suggests the ability to truth-tell and poses the risk of interpretation that Eco (1990) cautioned against.
Likewise, Rapley's belief in some level of truth-telling is evident in his conclusion that accurate, moral-free description is possible. It is unclear what Rapley means by his use of moral. If moral refers to a set of principles whereby there is some social agreement about how to make decisions and live by them, then Rapley's analysis and many of his claims are embedded in the im/moral world. They are first found in chapters 1 and 2 in his discussions of the problems with traditional psychology and his advocacy of the social model of disability (itself a staunchly moral standpoint grounded in disability studies). As one reads through his subsequent chapters, an immoral world is illustrated to include a mother who disables her own daughter, direct care workers who ignore the humanity of those for whom they work, examiners who cannot understand the subtleties of an examinee's conversation. Implicitly throughout, Rapley takes a moral stand against the oppression of people labeled as having mental retardation. Much like the traditional psychologists he criticizes, Rapley dresses his research in the clothes of accuracy (reliability? validity?), but their threads come apart in the end. Rapley writes that “rather than accepting the story that psy[chology] has trained us to tell ourselves about ourselves” (p. 209), we should follow Foucault's advice (1990, cited in this book) and tell our own stories.
For me, the question is not how to remove morality from research about mental retardation. The question is a moral one in and of itself: how to remove mental retardation from research about people. I want to believe that this is Rapley's question, too. He argues for the “abandonment” of the notion of intellectual disability and, in doing so, we are left with a hole to fill. If it is impossible to accurately describe something, and if there is to be no notion of intellectual disability or mental retardation, the only thing left to fill the void is with the story of lives as told by those who live them.