To be labelled, or not to be labelled: that is the ... - Wiley Online Library

ORIGINAL ARTICLE

To be labelled, or not to be labelled: that is the question Anita Ho, Department of Philosophy, The College of St Catherine, 2004 Randolph Avenue, PO Box 4056, St Paul, MN 55105, USA (E-mail: [email protected])

Summary

• ‘Learning disability’ label establishes accommodation eligibility and civil rights protection but provides an excuse for school officials and legislators to adopt a medical model of learning disabilities and ignore other problems in the educational and social systems. • A commitment to inclusion and equality requires an acknowledgement of various categorization problems, and a realization that various contexts may contribute to people’s different learning patterns. • Pathologizing learning difference may be unnecessary or even counterproductive if we presume that all children learn in their unique ways. It is more productive to design flexible curricula that can accommodate learning diversity. Keywords Inclusive education, special-education, stigma, universal access

Introduction This essay discusses the dilemma of diagnosing and labelling learning disabled people. On the one hand, the label of ‘learning disability’ establishes eligibility for people who require and would like to request accommodations that are promised by various disability and civil rights legislations. On the other hand, the categorization of ‘learning disabilities’ often backfires and provides an excuse for school officials and legislators to adopt a medical model of learning disabilities and ignore other problems in our educational and social systems that contribute to various students’ learning difficulties. Such opposing forces pose a dilemma for people with learning difficulties in claiming their rights to equal participation. I argue that a commitment to inclusion and equality requires an acknowledgement of various categorization problems, and a realization that various contexts may contribute to children’s different learning patterns. Given the historical burden of the medical model of disability, I suggest that we refrain from pathologizing children’s learning difficulties as much as possible, and focus more on the construction of various social and educational institutions.

The dilemma of labels Various industrialized countries have enacted legislations to promote inclusion of learning disabled children and adults

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in mainstream educational settings. For example, in the US, the Education for All Handicapped Children Act of 1975, which was later renamed Individuals with Disabilities Education Act (IDEA), offers financial incentives to encourage states to provide special services for disabled children. In the UK, the 1993 and 1996 Education Acts as well as the Special Educational Needs and Disability Act of 2001 (SENDA) provide a legal framework of meeting the educational needs of all disabled children. These legislations are supposed to protect the right of all children to be included and have full access in the ordinary classroom. Nonetheless, questions abound as to the efficacy of these mandates in protecting the educational interests of children with learning difficulties. In the UK, educational services have not been closely regulated, and there is evidence that students with intellectual and other types of impairments continue to face discrimination. Even in countries where services have been closely regulated, such as the US, students and parents continue to face challenges in requesting and finding appropriate educational and social services. In fact, many teachers and parents often face the dilemma of whether or not they should even test children who encounter behavioural and academic difficulties for learning disabilities. They also express conflicting ideas on whether or not they should treat learning disabled children as different and assign them to ‘special-ed’ classes.

ª 2004 BILD Publications, British Journal of Learning Disabilities, 32, 86–92

To be labelled, or not to be labelled

There are various reasons why teachers, school officials, and parents may want certain children assessed for learning disabilities. First, children and their parents or teachers may not understand or realize the cause of the children’s learning difficulties. Diagnosing children for learning disabilities may help these children and their parents and teachers to understand or cope with their condition, and realize their respective strengths and weaknesses in various areas. For example, a child facing difficulty in spelling may initially be thought to be lazy or lack interests in the subjects. A diagnosis of dyslexia may help show that the child’s difficulty stems from certain neurological condition. Such diagnosis may help parents to neutralize in their own minds their child’s learning difficulty as a matter of medical condition and not a result of poor parenting skills or the child’s moral failure. Once a diagnosis is made, school officials, teachers, parents, and the child can develop suitable educational plans and accommodations that can help the child to succeed. For example, in the UK, children with moderate or severe learning difficulties are assessed at a young age, following which a Statement of Special Educational Need is drawn up, setting out how the child’s educational needs will be met (Foundation for People with Learning Disabilities 2003). Secondly, given that mainstream educational programmes and standardized curriculum continue to be predicated on the assumption that all children function and learn in similar ways, some parents may worry that ‘regular’ educational programmes may fail to fulfil the academic needs of their children who do not fit the mainstream framework. They may want their child diagnosed and treated differently in order to secure specialized help to overcome obstacles to academic success (Minow 1990, p. 38). Thirdly, some teachers may also prefer to diagnose certain students for learning difficulties. Some of these teachers are educated to teach in a particular way, and may not be equipped to deal with students of multiple backgrounds and learning approaches. They may be concerned that children with various learning difficulties would require more attention than they can provide in a large class setting. These teachers may also worry that different competence levels make it difficult for them to teach the whole class at the same pace. They may want to diagnose and segregate those with learning disabilities for economies of scale and for the ease of teaching a more homogenous class. Fourthly, and perhaps the most important political reason for identifying a person as having learning disabilities, categorization establishes eligibility for legal protection. In many countries that have disability legislations, individuals have to be documented as learning disabled in order to be eligible for protection and various services. A diagnosis of learning disability is an ‘admission ticket’ to the entitlement


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of opportunities and special accommodations (Zuriff 1996, p. 403). After all, such accommodations are not provided for students who may be considered ‘slow’ or ‘less intelligent’ learners. For example, while schools are allowed to not admit or accommodate ‘less intelligent’ students, admission standards that discriminate against learning disabled students are outlawed. Once these students are admitted, their schools are required to accommodate them by providing alternative testing methods, special computers, books on tape, and so on. These services are only provided for students categorized as having learning disabilities (Triano 2000), although such measures can often benefit all students with varying needs. While a diagnosis of learning disability may provide various benefits and legal protections, there are many reasons why parents and children may still resist learning disability labels. First, not everyone appreciates learning disabilities or take these diagnoses as morally neutral. Given the historical oppression on disabled people, some may not want to think of or label their child or themselves as being disabled. More importantly, they may not want others to treat them or their child who is identified as having ‘special educational needs’ as abnormal and inferior. These parents’ and children’s concerns are understandable. While being categorized or statemented as having learning disabilities allows one to be formally protected by various disability mandates, there remain other negative social and political implications that are attached to such labelling. After all, our society has a tendency to create a ‘normal’ group and to label others as ‘deviant’ (Minow 1990, p. 31). While disability identification has allowed people to organize collectively through the self-advocacy movement, pervasive understandings of ‘learning difficulties’ and ‘learning disabilities’ tend to be framed in ways that directly confirm a personal tragedy model of disability (Goodley 2001). Although the person diagnosed may gain more understanding and can adapt to the label or advocate for herself based on the diagnosis, such labels of being different have often been understood to be inferior and not fit to be part of the ‘normal’ population. While disability legislations in various countries have been established to protect learning disabled students from being discriminated and to develop the least restrictive environment possible, it is often difficult to enforce such legislation. Even when such mandates are being followed by various organizations in making admission and employment decisions, they have not been effective in combating discriminatory attitude in the general society. School officials and teachers who follow the law often still consider learning disabled students as less competent or inherently inferior. These students are often put in less rigorous, ‘special-ed’, classes that have lower attainment probabilities. Teachers also often have different expectations of and attitudes towards these students. MacMaster et al. (2002), for example, cite a study that found that

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disability labels could bias teachers’ behavioural checklist scores. In this study, teachers who watched a video of a child and were told about his/her diagnosis of learning disabilities attributed more characteristics of mental retardation to the child than teachers who were not aware of the diagnostic label for the same child. In other words, being labelled as having learning disabilities can affect other people’s perceptions and expectations of that child. Secondly, parents may worry that when their child is being labelled as having a learning disability, classmates may treat him/her as an outsider. This can be especially devastating for children, since many want to ‘fit in’ and be part of the group. Parents may worry that individualized educational programmes for learning disabled students would lead to more instances of children being excluded from mainstream participation, which may be important to children’s self-esteem. As Sabornie’s (1994) study shows, learning disabled students often express more loneliness and feel less integrated in school. More alarming is that these students surveyed reported being threatened, physically assaulted, or having their possessions removed from them with greater frequency than undiagnosed learning disabled students. Thirdly, parents may worry that when their child is labelled as having learning disabilities, school officials and other students will only focus on this particular feature of the child and ignore other individual characteristics. As Higgins et al. (2002) note, when a person is considered to possess certain ‘failing’ or discredited characteristic, she may automatically be treated similarly as all other persons with the same ‘failing’, regardless of their achievements or other distinguishing characteristics. This is evident in how a child may face organizational or legal constraints on educational attainment once he or she is labelled as having learning disabilities (Powell 2003). The child may no longer be regarded as an individual with unique abilities, learning styles, circumstances and aspirations. There is a popular assumption that having learning disabilities constitutes the whole identity of the student, and that every child with the same diagnostic label is of the same kind and has the same instructional need. Once a child is labelled, various expectations and stereotypes that are tied to that label may be imposed on her. Such label may change the child’s access to later educational and employment opportunities. It may also produce negative expectations among the child’s teachers or even family members. Fourthly, one may worry that school officials have ulterior motives in diagnosing students as learning disabled, given the funding situation in the various educational systems. As Zuriff (1996) points out, in the US, almost two and a half million school children are diagnosed with learning disabilities, an increase of roughly 150% in 15 years. However, it is perhaps not a coincidence that the number of students diagnosed with learning disabilities in the US has exploded

throughout the years. For every child the school identifies as learning disabled, it receives government money. It also provides a way for teachers and school officials to move certain children out of the regular classroom. This is especially an attractive prospect for many schools, as moving children into special education means a smaller class for the teacher, a possibly higher average score for the school on standardized tests, and less ‘problem children’ for the teacher. It also provides a way for schools and teachers to blame the child’s academic failures on neurological conditions, rather than school problems or teachers’ incompetence to deal with a diverse student population. Given that school officials may have mixed motives in wanting to diagnose children as having learning disabilities, some parents may be reluctant to risk having their children being ‘used’ to hide various institutional problems. This last point brings out the fifth, and perhaps the most problematic, issue of diagnosing children for learning disabilities. As I mentioned before, in order to be protected under various disability legislations, children have to be diagnosed or statemented to have a particular impairment, which is presumed to be the cause of their educational difficulties, and that special education and related services are the cure. One of the underlying assumptions is that such classification is useful for educational purposes, such as identifying student competence, designing instructional programmes, and developing appropriate interventions and supports. However, some (e.g. Triano 2000) argue that such eligibility requirements are often irrelevant to a child’s instructional needs. More importantly, they assume the medical model of disability and provide school officials an excuse to ignore unfair educational and social structures. According to the medical model of disability, disability is a ‘natural’ problem of the person, directly caused by the person’s mental or physical impairments. Opponents argue that the medical model invites the thought that children diagnosed with learning disabilities are abnormal and naturally inferior to children not diagnosed as such. It assumes that the defect and failure are in the child with such diagnosis, rather than caused by the poorly developed regular classroom programmes that fail to meet the needs of a diverse student population. I agree that the medical model of disability is inadequate in explaining the experience of children with learning difficulties or promoting equal educational opportunities for all children. The medical model concentrates on the biophysical anomalies and overlooks the fact that the experience of people with impairments can vary drastically depending on the culture and social structure. In fact, as one author (Zuriff 1996, p. 396) points out, diagnoses of most cases of learning disabilities are based on observations of academic work and performance on psychological tests. Brain dysfunction is not proven, but only inferred by a process of elimination, when no other cause for a child’s unexpected



school performance is found. In other words, even throughout the process of diagnosing a child, we are still usually only assuming the biological basis for the child’s academic difficulties. So it seems that diagnosing learning disabilities is not totally a medical science but something of an art. Certainly, sometimes a child’s learning difficulties may have some biological basis. However, we still need to be cautious in quickly assuming that neurological conditions are the cause of the difficulties or pathologizing such difficulties. After all, it is often unclear what other possible causes for the child’s academic performance are considered before medical officials infer that neurological dysfunction is the probable culprit for the child’s difficulties. For example, officials do not always look at the child’s family, social context, and educational institution before diagnosing the child as having learning disabilities. We also need to be careful in assuming that our determination of biological causes of difficulties are purely objective. Medical labels and diagnoses often give the appearance of being rational and neutral because they are ‘discovered’ and interpreted by prestigious professions, such as medicine and psychology (Powell 2003, p. 67). However, these ‘scientific’ or ‘medical’ labels are not valuefree and objective observations. As Powell (2003) points out, children are selected out as they are ‘discovered’ to have learning disabilities in certain settings. Diagnoses are often based on our biased or even erroneous assumption that all children learn the same things at the same pace, as reflected in many countries’ wide usage of standardized tests that expect or even require students to master a common curriculum. They are not objective ‘facts’ and ‘truths’, but are ideas constructed and defined by professionals (Gillman et al. 2000). While in some cases these diagnoses are helpful in recognizing various students’ needs, in other cases they are intentionally or unintentionally used as a political tool to discriminate students who are diagnosed of various impairments and to control their future educational and employment opportunities. Hacking’s (1999) explanation of how medical labels and classifications are associated with a regimen of treatment, schooling, exclusion, or inclusion can be helpful here. Many assume that the notion of mental retardation is a natural way to classify children of certain types of learning or behavioural deficit. However, Hacking points out that such ‘diagnosis’ is not merely a clinical observation. Rather, it is a social construction that is highly contingent and reflects the medical and social attitudes of a particular society in a specific era. Such classification has become embedded in a complex matrix of institutions and practices. It has frequently been used to determine what types of behaviours are or are not acceptable. Such determination is in turn employed to control difficult children, to take them away from schools, and to put them into institutions or regimen of treatment. These classifications, Hacking explains, are


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socially constructed and can have direct impact on children so classified and shape their social relationships. For example, many children who are diagnosed as ‘mentally retarded’ and removed from their class for more individualized tuition gradually develop new patterns of behaviour. These children adjust their expectations and aspirations according to their diagnosis and the fates of other people with the same diagnosis. Their relationships with families, schoolmates, and teachers are also affected by such classification. As we saw in the study cited in MacMaster et al. (2002), other people’s expectation, attitude, and behaviour towards the child diagnosed with learning disabilities often change upon realizing that the child has been so characterized. As we can see, our social and educational systems often impose various non-neutral standards based on certain mainstream or even arbitrary paradigms. These specifically chosen paradigms create various educational and learning norms that are used as inclusionary and/or exclusionary criteria. The social constructionist perspective helps us to recognize how various environmental and social barriers also contribute to the disadvantages of certain students. Students diagnosed with learning disabilities have vastly different experiences, depending on the environment and availability of accommodations. For example, many students can show high achievement in subjects they previously encountered difficulties when flexible teaching and/ or evaluative measures are used. Learning difficulties therefore cannot be simply understood as objective clinical diagnosis. Rather, we need to examine the whole complex combination of social structure, history, and power relation. Difficulty in recognizing alphabets and words, or what is often called dyslexia, for example, by itself does not necessarily prevent students from academic success. Whether or not such difficulty may prevent students from succeeding in school and later in the workplace largely depends on the expectation and attitude of the society, and if accommodations or alternative teaching and learning methods are available. We need to be careful that the medically based system of categorization may blame the person diagnosed and draw attention away from the socially constructed barriers that children face in regular school programmes (Triano 2000).

Any way out? Given the oppressive history of disability labels, how can we ensure that children with varying capacities and learning styles will all receive suitable instructions? Should we continue to diagnose children with various learning difficulties? Or should we simply eliminate all categories and move to a non-categorical system? Given the stigma traditionally attached to disabilities, it is important to recognize the danger of pathologizing differences and ignoring the disadvantaging potential of our

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educational environment and social structure. While a diagnosis may help some people in understanding and adjusting accordingly, it can also create social disadvantages for people so labelled. It is also important to realize that diagnoses of learning disability can be unreliable, and that it may not always be helpful for instructional development. As Higgins et al. (2002) point out, the formal definition of what constitutes learning disabilities is in constant flux; it changes according to evolving legislations and other eligibility requirements. However, just because assumptions about learning disabilities are problematic do not mean that we should stop acknowledging and understanding learning difficulties altogether. The problem with our educational and social systems is not that we recognize differences. Rather, the problem is that we often make erroneous assumptions about the causes of differences and difficulties, and we either ignore differences or stigmatize those who are considered different. When we ignore differences, we work with the assumption of homogeneity and do not recognize the need to have a framework that accepts and accommodates diverse developmental patterns and learning styles. When we make false assumptions about the causes of differences, we may stigmatize these learning differences and simply assume that they are results of natural inferiority. As one author argues, classification systems institutionalize the meanings, labels, and categories that establish lasting symbolic and social boundaries between groups, constructing but also legitimizing inequalities in the educational system (Powell 2003, p. 64). To solve the dilemma of disability label and to fulfil the original intention of various disability and civil rights legislations to provide equal educational opportunities for all, I propose that we start with the presumption that all children learn in their unique ways, and examine how our educational and other social institutions are constructed. While neurological difference in some contexts are possible, I argue that pathologizing such differences is unnecessary and perhaps even counterproductive in the educational system. When we encounter students with various learning difficulties, we should not simply assume that such difficulties are caused by various medical conditions within the child. We need to examine the complex context of the child’s academic performance. I suggest we start the understanding process by looking for social, cultural, economic, and environmental conditions that may influence the child’s learning. For example, we need to examine how the child’s family dynamic, nutritional intake, living condition, and health may affect her learning process. A child who has various health concerns, or one who lives in poverty and comes to school hungry everyday, understandably may have shorter attention span that can negatively affect the learning capacity. A child who speaks a different language at home may also demonstrate different language skills that

can influence her academic performance. We also need to observe the child’s formal learning environment, such as the child’s relationship with other people at school, school curriculum, instructors’ attitudes and teaching or testing methods, and school officials’ responses to the child’s needs and requests. All these factors can greatly affect the child’s development and learning. For example, standardized curricula and achievement tests often only measure isolated bits of students’ knowledge and may not be good indicators of learning (Wade & Zone 2000, p. 17). They may frustrate and disadvantage students who have varying learning patterns. In other cases, a school that has very rigid rules, low response rates, or high incidence of labelling children as having learning disabilities may discourage students from communicating with their teachers or seeking help when they experience difficulties. These students may simply want to go along and pretend that nothing is happening, even when silence may further affect their academic performance. I propose that we refrain from pathologizing academic difficulties as much as possible. While there is no doubt that students have different learning patterns and that we need to study such differences carefully, there are good reasons to not presume that such differences are results of neurological variability. As one author (King 1992) points out in her discussion of research on biological differences among various racial groups, historically the greatest harm has come from the willingness to impute biological differences rather than the willingness to overlook them. Given the historical burden of the medical model and the continuing blame towards children who are being labelled as having learning disabilities, I suggest that we first examine the social construction of various external factors and see how they may contribute and respond to children’s varying learning patterns. One may question if it is realistic and desirable to remove disability labels for students who face learning difficulties. After all, previous attempts of eliminating categories of learning disability have not succeeded. As Triano (2000) points out, in the US, the Department of Education and the Senate have tried to replace the 12 disability categories in IDEA with a non-categorical system of eligibility that parallels the disability definition in the Americans with Disabilities Act. However, such efforts have faced substantial resistance by parents of disabled children and organizations such as Learning Disabilities Association of America. They worry that elimination of categories may jeopardize the hard-won educational opportunities and rights for disabled children. By focusing on other variables instead of considering neurological differences, many children would not be diagnosed as having learning disabilities and thus would not be eligible for disability accommodations. It is unclear that opponents of the attempted change of the categorical system truly wanted to keep the labels. Perhaps



they were only worried about losing the services without such labels, as legal protection in many countries is closely tied to such labelling. Certainly, my proposal may not work within the current system of eligibility. However, that might simply mean that we need to reform the current system and adopt a more inclusive educational framework that does not predicate on the different categories. After all, it is ironic that a system that strives to provide equal educational opportunity would require children to be labelled in order to qualify for equality. Instead of pathologizing learning difficulties, we should examine whether or not the educational environment is supportive of children of diverse learning patterns. If the environment is flexible enough to accommodate differences, the question of whether or not a student’s learning difficulty has a neurological component may not be necessary. Nonetheless, it is important to note that it may not be adequate for schools to simply provide ‘special’ accommodations or adjustments to students with learning difficulties on an individualized basis. Certainly, sometimes it is necessary to provide accommodations on a one-to-one basis. However, as Johnson & Fox (2003, p. 8) point out, the stigma for learning disabled students is often exacerbated when they are singled out by being required to take tests in separate locations in order to be afforded extended time or to request note-takers. Sometimes, arranging for accommodations can also be cumbersome because it takes students an inordinate amount of time and preparation. ‘Special’ accommodations and adjustments may therefore not always promote equal access to educational resources. I suggest that implementing flexible and customizable measures into the curricula can minimize the need for accommodations and be the better way to promote equality among learners of diverse backgrounds. This does not mean that we should adopt a ‘one size fits all’ approach to teaching (Johnson & Fox 2003, p. 14). Rather, the focus is to promote universal access to education. Inclusive and universal methods can make classes more accessible to students with various learning skills, thereby creating an environment that is conducive to learning for a wide range of students, regardless of their backgrounds and circumstances. For example, putting course materials online allows students who are blind to use a screen reader or to download the text to be brailed. Implementing online discussions also allow students who have difficulty participating in class because of language or cultural barriers to contribute. Such flexibility acknowledges the fact that using a single teaching or assessment method can disadvantage various groups of students who do not fit a narrowly defined and perhaps arbitrarily chosen paradigm. What many educators consider to be the best or most effective practice in the classroom often only fits or benefits students of certain learning styles or backgrounds. Inclusive pedagogical designs that explore multiple teaching and assess-


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ment measures recognize that there are different legitimate ways for students to meet various defined course objectives. Inclusive education can benefit students of various learning styles, cultures, languages, and other backgrounds. It has implications on not only the formal school setting, but also the social structure in general. Investigation of various disadvantaging possibilities and development of flexible pedagogical and evaluative methods can help us realize various interconnected aspects that can all affect learning. Such measures can guide us to restructure other social institutions in fulfilling the original intention of various disability legislations to provide equal educational opportunities for all our children. One may wonder if such reform in the educational and social structure will be unduly expensive and time consuming. Certainly, designing new pedagogical strategies may take great effort and additional resources at the beginning, especially for school officials and faculty who are not used to thinking about diverse learning needs. However, once these strategies become standard practices, they may actually help faculty and students save time. Many assistive technologies such as specialized softwares have been invented to improve access to education and respond to individual learner differences. Such flexible means of presenting materials and assessing students in the end are also more efficient than what some may initially assume, since they are good for all students, whether they are thought to have or not have learning disabilities.

References Foundation for People with Learning Disabilities (2003) Education for children and young people with learning disabilities. Available at http://www.learningdisabilities.org.uk/page.cfm?pagecode¼ ISEEEDMT (accessed June 2003). Gillman M., Heyman B. & Swain J. (2000) What’s in a name? The implications of diagnosis for people with learning difficulties and their family carers. Disabil Soc, 15 (3): 389–409. Goodley D. (2001) ‘Learning difficulties’, the social model of disability and impairment: challenging epistemologies. Disabil Soc, 16 (2): 207–31. Hacking I. (1999) The social construction of what? Cambridge, MA, Harvard University Press. Higgins E., Raskind M., Goldberg R. & Herman K. (2002) Stages of acceptance of a learning disability: the impact of labeling. Learn Disabil Q, 25 (1): 3–19. Johnson D. & Fox J. (2003) Creating curb cuts in the classroom: adapting universal design principles to education. In: Jeanne H., editor. Curriculum transformation and disability: implementing universal design in higher education. Minneapolis, Center for Research on Developmental Education and Urban Literacy: 7–22. King P. (1992) The dangers of difference. Hastings Cent Rep, 22: 35–8. MacMaster K., Donovan L. & MacIntyre P. (2002) The effects of being diagnosed with a learning disability on children’s selfesteem. Child Study J, 32 (2): 101–8.

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Minow M. (1990) Making all the difference: inclusion, exclusion, and American law. Ithaca, NY, Cornell University Press. Powell J. (2003) Constructing disability and social inequality early in the life course: the case of special education in Germany and the US. Disabil Stud Q, 23 (2): 57–75. Sabornie E. (1994) Social-affective characteristics in early adolescents identified as learning disabled and nondisabled. Learn Disabil Q, 17: 269–79. Triano S. (2000) Categorical eligibility for special education: the enshrinement of the medical model in disability policy. Disabil Stud Q, 20 (4): 399–412.

Wade S. & Zone J. (2000) Creating inclusive classrooms: an overview. In: Wade S., editor. Inclusive education: a casebook and readings for prospective and practicing teachers. Mahway, NJ, Lawrence Erlbaum Associates, Publishers: 3–28. Zuriff G.E. (1996) The myths of learning disabilities: the social construction of a disorder. Publ Affairs Q, 10 (4): 395–405.
