Introduction

This paper examines a recent policy debate by means of a particular rhetorical approach. That approach, based on the strategic use of word definitions and repetition, is applied to the deliberative process underlying attempts to provide appropriate special education accommodations for students with Tourette Syndrome (TS) in the U.S. public school system. Thus, this paper's goals are threefold: to present and apply an explicit model for arguing and advocating with definitions; to examine how an advocacy organization has participated in civic deliberations about disability law in the public schools; and to offer this approach as a model for future advocacy work.

To begin, I discuss my definitional approach, than use it to consider "what TS is," according to the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the Individuals with Disabilities Education Improvement Act (IDEA). Next and following the definitional approach established, I examine "what TS ought to be," as characterized by an advocacy group, the Tourette Syndrome Association (TSA), and the Touretters and scientists for and with whom it works.1 In this way, my paper demonstrates how TSA helped to make an unprecedented change to IDEA, specifically by means of public deliberations which redefined how TS should be defined in a school setting.

Let me include an important caveat. This study deals with definitions as they are used in historical contexts by applying a rhetorical framework which recognizes that definitions change and generate meaning over time. Accordingly, my analysis does not hold that any particular definition is correct and universal; instead, each definition is analyzed in terms of the time and context in which it is used. By unpacking these terms' uses at these times and places, I uncover problematic assumptions within them as well as the ways in which new meanings are generated in response to these problems. When such problems emerge, I will note them from the perspective disability studies brings to bear on them. That said, my analysis holds that disability is about individual identification as marginalized rather than group exclusion as deviant from some norm (see below).

The Definitional Backgrounds

Disability scholars write compellingly about the complexities of assigning meaning, creating categories, and naming terms and concepts (Davis, "Constructing Normalcy, 2006; Linton, 1998, 2006; Sieber, 2006; Wilson, Lewiecki-Wilson, 2001). To those ends, such scholars have recently looked to rhetoric (see Wilson and Lewiecki-Wilson, 2006), a discipline which helps people to communicate systematically, effectively, and responsibly in given situations. Although rhetoric has a long history in the Western tradition (over 2,500 years), all rhetorical theories are concerned with the relationship between audience and rhetor.2 As presently understood, both rhetoric and disability studies involve how language constructs meaning; both are also concerned with social practices and the arguments which sustain and change them. Accordingly, disability scholars have turned explicitly to rhetoric to examine, for instance, how terms are used, how the body is represented, how narratives and autobiographies are constructed, and how public and private spheres interact in areas of diagnosis and treatment (Barton, 2001; Brueggemann and Fredal; 1999; Couser, 2001; Stoddard Holmes, 2001; Prendergast, 2001; Wilson and Lewieki-Wilson, 2001).3 As such, rhetoric provides disability studies with an explicit approach to consider arguments, persuasion, and their effects.

One of the pervasive persuasive means an individual or group may use to communicate effectively is definition. As Edward Schiappa discusses (2003), definitions are not simply static, universal, and objective premises found in dictionaries; instead, and as regular revisions of dictionaries indicate, definitions represent cultural notions about what given entities are at given times and places. New editions of dictionaries demonstrate such change.4 As rhetorical and culture-bound constructs, definitions reflect how words are understood by the individuals who use them in certain times and places and under certain conditions.

The history of the term "disability" and the emergence of a discipline which studies it attest to the rhetorical nature of definitions. In the fourth century BCE, Aristotle set the stage for the definition and construction of disability in the Western tradition by conferring on it a presumed natural understanding as political exclusion (Wilson, Lewiecki-Wilson, p. 4). In so doing, he helped erect the infamous mind/body divide which not only separated the mind and logic as norm from the body as subjective and deviant but, in so doing, defined disability as exclusion and deviance for nearly three centuries. Despite variations in the way they were framed, these themes of exclusion and deviance constrained disability for nearly three millennia. Within the twentieth century, this normative understanding was complicated by social constructive, identity, feminist, and other post modern perspectives. As a result, the definition of disability has shifted, in its academic understanding and increasing in public forums, from one of exclusion to one of embodiment and of identity; "disability can be defined as that individual or group who identifies as such, an understanding which is based on a marginalized status" (Linton, 2001, p. 163).

Despite these shifts, definitions are typically used and understood in their default universal mode, that is, as static and unchanging. Thus understood, definitions underpin the deeply ingrained positions on disability discussed above as well as those involving public debates over abortion (is abortion about "life" or "choice"?) and euthanasia (is "death" defined by heart beat, spirit, or brain waves?); (Schiappa, Part II).5 Implicitly, each position rests on an absolute definition, one which answers the question "what is X?" (Schiappa, 1999). Defining a term as "X," implicitly or explicitly, allows the user to highlight certain characteristics of the entity and omit others. In so doing, the argument on which the definition supports appears to be universal. From this perspective, if a life begins at birth, for example, than abortion is always murder; if death cannot be captured by any life functions than treating terminal illnesses is constrained in significant ways. And, if disability is about deviance from the norm, than there is no way for the disabled to belong to an advantaged group. When definitions are understood as universal, opposing arguments can only disagree; with no overlap in positions, further discussion is often impossible.

However, when definitions are understood as rhetorical and generative rather than as universal and static, they provide consistent and responsible frameworks for deliberation. To shape such deliberation, Schiappa advises language users to approach communicative situations by identifying and defining key terms, asking not "what is X?" but "how ought I define X in the context of Y?" (p. 45). Explicitly framing a definition in this way offers a pathway for deliberation. Focusing on what "X" is in specific situations acknowledges the multiple and ambiguous ways words can be understood, asking users to agree to agree in that one context (though such temporary agreement also opens the door to subsequent change). Thus, as the analysis involving TS demonstrates, explicit definitions not only frame arguments but also represent arguers as open, aware, and responsible about their choices, providing room for consensus.

To help the definitional process which mediates between opposing views, various rhetorical strategies can be used (see Schiappa, 2003, Part III).6 One simple and common approach, and the one on which the deliberation over TSA's redefinition of TS relies, is repetition. Repetition is traditionally understood as an element of style which operates as an ornamental rather than substantive use of language (another manifestation of the mind/argument, body/subjective split). But, elements of style also contribute to arguments (Fahnestock, 1999, Newman, 2005). Metaphors, for instance, make arguments; certainly "retards" and "crips" are metaphors which make arguments about disabled individuals (as does the latter's use in turning the tables on that term within disability studies itself). To make arguments, elements of style depend on certain patterns. Mediating between words and audience, these patterns prompt audiences to pay attention, set up expectations, and remember the words. In the antimetable, an antithetical structure, the audience anticipates the concluding word or phrase and completes the argument, as in "fair is foul, foul is …." (Shakespeare, Macbeth 1.1.10). Any verbal pattern, including repetition, which sets up audience expectations and helps them participate in the argument as this example argues.

From this perspective, effective or strategic repetition involves more than the unintentional reuse of insignificant terms, "like," "very," etc., that often comes with conversation or spontaneous writing. Rather, this repetition involves intentional use of significant terms to call attention to the concepts they embody (Quinn, 1993). Anaphora, repetition of words or phrases at a sentence's start, enables audiences to remember statements. Lincoln's 1863 Gettysburg Address would not be the same without anaphora: "But, in a larger sense, we can not dedicate — we can not consecrate — we can not hallow — this ground." Repeating words or larger lexical units cements concepts in the reader/listener's mind and even allows her/him to anticipate future statements, as in another memorable speech, Martin Luther King's "I Have a Dream" speech. Strategic repetition thus supports certain associations between words and concepts and, by contrast, omits other associations.

To recapitulate, rhetoric focuses on language in use, produced and analyzed, helping authors to construct effective discourse, to think about the effects of their words, and to choose them wisely. As such a strategic rhetorical practice, definitions are central to arguments. When the assumptions on which key definitional terms are not recognized, the position they support appear to be universal, often hindering substantive deliberation. But, when acknowledged, definitions and their underlying assumptions can be used to clarify positions in the public forum, prevent some misunderstandings, and help effect changes that resonate in cultural concepts because all parties hear and accept the definitions in that context. Deliberation involving repetition over TS's definition provides a model for how such explicit definition and advocacy can work.

What TS Has Been

TS, of course, has been and is understood in different ways by different people in different contexts (on the history of TS since its naming, see Kushner, 1999). Within its history, however, all definitions have begun with what individuals with TS present to the world. That is, TS cannot be identified by any kind of test but is diagnosed by observing symptoms. These symptoms present along a spectrum. While many affected individuals have florid gestures and vocalizations, others display symptoms far less extreme. In addition, TS is not always about its most obvious signs. Most Touretters experience so — called co-morbid, or attendant, conditions which can be as problematic as the tics: obsessive, compulsive, and/or impulsive thoughts, ADHD as well as heightened sensitivity to sensory stimuli. As I discuss below, in an educational setting, these conditions can contribute to coordination problems that impair writing and to problems with perseveration which weaken abilities to be organized and on task.

Before TS was identified as a distinct condition, it belonged to the history of those disabilities understood as deviance from the normal, either physically, like epilepsy, or mentally, like hysteria or melancholia (Micale, 1995, Midelfort, 1999). When George Gilles de la Tourette first named TS as a distinct entity in 1885, he was attempting to understand it as movement disorder in individuals without other health problems (1885; Newman, forthcoming). At the turn of the twentieth century and under the influence of Freudian perspectives, TS and its tics became signs of repressed desires and various neuroses, as they were called, problems the individual could control once repression was recognized consciously and treated appropriately.

By the 1980s, the medical community had discovered a neurological component in the Touretter's brain chemistry, which meant that symptoms could be alleviated by anti-psychotic drugs such as Haldol. With this treatment, the medical community located TS in the DSM, the definitive and most widely used source of diagnostic criteria of mental disorders (in the United States and increasingly worldwide).7 Locating TS in the DSM framed it in terms of its visible and audible manifestations, its tics, and these as mental problems, specifically, behavioral or conduct disorders. 8 According to the most recent, fourth edition of the DSM, a tic is "an involuntary, sudden, rapid, recurrent, non-rhythmic, stereotyped motor movement or vocalization. It is experienced as irresistible but can be suppressed for varying lengths of time" (p. 180). Unintentional rather than purposive, the movements and sounds can be simple, imitative, and, even obscene (although coprolalia, as it is called, occurs in only 15% of Touretters).9 TS differs from other tic disorders because it is persistent and lifelong; the frequency, length, and site of the tics may vary over time, and it begins during childhood. Although the DSM classification recognizes the non-purposive character of the tics, they are understood nonetheless in the context of behavioral and conduct problems.

Current TS researchers are studying the neurological component of TS. As they have demonstrated, TS is a neurological disorder in that it originates in atypical functions of neurotransmitters in the brain, neurotransmitters in areas involving movement and speech. These atypical functions are no doubt related to the co-morbid conditions Touretters exhibit, since all have similar locations in the brain. Significantly, because TS is based on chemical imbalances, tics cannot be suppressed, at least not without causing stress which accentuates the co-morbid symptoms. From this perspective, TS is not about behavioral and or emotional issues but about neurological ones. On the one hand, this medical understanding still locates TS as deviant; nonetheless, it recognizes the health, sensory, and environmental factors that outward symptoms do not reveal, notably OCD, sensory integration, and ADHD.10

As a disorder, then, TS has broad manifestations and is, accordingly, experienced and understood by different people in different ways. Many, if not most, of these understandings are based on observing TS's outward symptoms rather than on any of its neurological mechanisms or of Touretters' personal experiences. It has followed that TS's public definition is constrained by its location in the DSM as well as its longer history and popular association with strange movements and vocalizations. This definitional mismatch led to misunderstandings for students with TS in an educational context.

What TS Is According to the IDEA and What It Ought to Be According to TSA

In 1975, Congress enacted the Education for All Handicapped Children Act to ensure a free, quality public education to all children with disabilities.11 Known since 1997 as IDEA (Osgood, 2008, p. 123), the bill provides Special Education to qualified children in the school and private health care systems. To receive appropriate accommodations, a child must be placed into one of 13 categories.12 These classifications attempt to contain a range of physical, emotional, and learning differences in ways which allow for consistent and appropriate educational accommodations; these are implemented in plans which include instruction, intervention, and treatment.

No version of IDEA has ever included TS. Given the outward nature of the symptoms TS presents and its association with the DSM as a behavioral/conduct disorder, children with TS have typically been classified as Emotionally Disturbed (ED).13 According to this definition, an ED student exhibits "an inability to learn that cannot be explained by intellectual, sensory or health factors" (Muller and Markovitz, 2004, p. 19). As a result, ED students receive accommodations which help them manage their inabilities; because these inabilities involve unacceptable behaviors and conduct, not "explained by intellectual, sensory or health factors," accommodations may include separate or partially separated classrooms.

If an individual's source on TS is the DSM and/or only incidental contact with anyone with TS, this classification may make sense. It is easy to think that the tics are intentional and can be controlled. But, children with TS have had considerable problems with the ED classification. As TSA discusses (see below), this is because ED accommodations are inappropriate for students with TS who have sensory and health issues not addressed by and in fact in conflict with that classification.14 Consequently, ED interventions approach tics as a behavior to stop when tics are involuntary neurological events. Similarly, ED students are frequently segregated classrooms or schools (http://www.ed.gov/about/reports/annual/osep/2003/25th-vol-2-tables-ab.pdf). Isolation from general education is not necessary for students with TS. Removing students from the mainstream and/or blaming them for actions they cannot help does not make for effective educational plans (Ziner, 2006).

Alternatively, TSA identified another classification which could be applied to students with TS, one which focuses on health and sensory issues. Other Health-Impaired (OHI) refers to students with "limited strength, vitality or alertness, including a heightened alertness to environmental stimuli; to chronic or acute health problems, for example, asthma, ADHD, epilepsy, rheumatic fever" (Muller and Markovitz, 2004, p. 20). Those Touretters classified as OHI fare better than those labeled as ED (Connors, 2009; Scott, 2006). This is no doubt because students with OHI are far less likely to be segregated from general education than students with ED and because the disciplinary techniques for the categories differ from those which recognize that the tics are non-purposive (see below). But, the prevalent understanding of TS as a behavioral and conduct problem has prevented the vast majority of Touretters from receiving that classification.

Deliberating About TS

As any Federal bill, IDEA can be and often is updated. Its most recent reauthorization, issued in 2003, provided TSA with an opportunity to address its concerns with the classification of Touretters in the bill. Although individual conditions are named in OHI, no specific condition had been granted a reclassification and naming as TSA was requesting. Throughout the more than five-year deliberative process, TSA focused on one issue: classifying TS as OHI to provide appropriate disciplinary standards and teaching strategies for Touretters. They did so by redefining what TS ought to be in an educational context. Every document TSA directed to members and friends of TSA, on the one hand, and to Congress and lawmakers, on the other, was framed within an alternative definition of TS, one which emphasizes TS's health and sensory elements, its involuntary nature, and the experiences of the individuals with TS. In particular, the documents rely on repetition and omission of key terms, repetition to characterize TS as neurological difference and omission to dispel any association between it and behavioral and conduct disorders.

As early as 2001, TSA begins advocating for reauthorization based on redefining what TS ought to be.15 Sue Connors, TSA Education Committee Chair, offers her testimony to Congress on December 6 of that year. After introducing herself, Connors introduces TS in terms drawing on recent TS research.

Tourette Syndrome is a neurobiological disorder characterized by involuntary motor and vocal tics. Typically it first appears between the ages of 7 and 11. TS is a very complicated neurological spectrum disorder. In a large percentage of cases it is accompanied by other neurological disorders, the most common of which are Obsessive-Compulsive Disorder, Attention Deficit Hyperactivity Disorder, and nonverbal Learning Disabilities. It is estimated that 200,000 people in this country have full-blown TS, and many more have related tic disorders. (Connors 2001; emphases added)

Connors' opening statement not only depends exclusively on terms from recent neurological studies of TS but also on repetitions of them. Within the one paragraph, she calls TS a neurological disorder three times and links it with related tic disorders, OCD, ADHD, and non-verbal learning disabilities; all of these belong, from the OHI perspective, to health and sensory issues associated with neurological difference. Conversely, she never mentions behavioral or conduct disorders nor any symptoms associated with them in the DSM or the ED classification.

Connors reiterations serve her argument to include TS as OHI in IDEA. That is, the repetitions set up the audience's expectations, prompting those listeners to anticipate how Connors will characterize TS. By repeating characterizing TS in terms of neurological difference, involuntary manifestations, and Touretters' experiences, and omitting any reference to the familiar, stereotyped symptoms, Connors highlights what TS ought to be and suppresses what it is not. Any time TS is now mentioned (here or in the future), the listener thinks of it as non-purposive neurological events. Conversely, by omission, TS is no longer associated with behavioral and conduct disorders. Repeatedly naming TS in these neurological terms has another, cumulative effect. It creates a part to whole argument: TS, OCD, ADHD, and tic disorders are parts of an OHI whole.

Having identified TS as part of the greater OHI whole, Connors moves from TS's internal operations to its symptoms.

It is easy for someone to understand how large motor tics can interfere with classroom performance. If someone's head were jerking from side to side or if someone's arm were flailing, the interference would be obvious. Some of the barely noticeable tics, however, can be the most interfering in a classroom setting. A very common facial tic is an eye blinking tic. As a seven-year-old, I was blinking my eyes so rapidly all day long that I actually broke vessels in my eyes. Try reading or writing while your eyes are constantly blinking. It is impossible. Yet this is a tic that few pay attention to because it does not disturb the classroom. I used to work with a child who had a finger crossing tic, again a quiet and unobtrusive tic. Writing was extremely difficult if not impossible. Taking notes became a most frustrating experience. (Emphases added)

Connors does not focus on TS's stereotypical verbal and gestural manifestations but on those that are unnoticed, misunderstood, and the most problematic for students with TS. When Connors mentions TS's stereotypical gestural symptoms, she characterizes them in relatively mild terms. Thus described, TS is not a behavioral issue but a condition involving neurological, health, and sensory differences; these differences can be very frustrating to the Touretter, especially if her/his actions are misunderstood as misbehavior.

Connors began her testimony by using the objective language of scientific classification to establish her credibility as an education professional and to ground the redefinition in scientific fact. Here in the second paragraph, she offers personal anecdotes to gain another kind of credibility, the insider's perspective. In particular, the personal approach helps her introduce unfamiliar information to the audience. Focusing on the Touretter's frustrations, Connors clarifies that TS is not about the obvious symptoms, but about the misunderstood, unnoticed symptoms (as most individuals with TS will attest).

The next paragraph links TS with OCD, an OHI symptom, describing their combined effects on student performance in continuing terms of frustrations and misunderstandings. It also characterized TS in terms of disorders named in the OHI classification, a movement disorder, epilepsy, and one of the co-morbid conditions associated with TS, ADHD.

Similarly, Obsessive-Compulsive Disorder, which often appears with TS, can be terribly interfering, but it is rarely noticed by the classroom teacher. I once worked with a young girl who developed a counting obsession. She had to count every word in every sentence that she read or wrote, and then would record the number at the end of each sentence. You can imagine that once she developed this obsessive-compulsive trait, her grades plunged. Yet, because this was going on in her head, no one noticed. Despite their intentions to succeed, children with TS sometimes find tics and other TS symptoms interfering with learning. (Emphases added)

Not only is TS associated with OCD (and by inference neurological disorders and sensory/health issues), but these unnoticed symptoms impede learning. Again, the audience must understand that the Touretter is not misbehaving; if that student could, s/he would. Again, there are no references to TS in terms of behavioral issues, and no mention at all of coprolalia.

By now, Connors has set up the audience's expectations through carefully selected repetitions and associations (and associated omissions and dissociations): her Congressional listeners now expect TS to be characterized as a condition involving health, sensory, and neurological differences with subtle but extremely frustrating repercussions:

Children with TS very frequently receive no special educational services because of misunderstanding about the nature of their symptoms. Educators continue to erroneously see TS as a behavioral or conduct disorder which results in the inappropriate placement of these children. For example, in most cases children are placed into the emotionally disturbed category and in some cases into the behaviorally disturbed category. Both of these scenarios are extremely detrimental to meeting the educational needs of students with TS in the least restrictive environment. Tourette Syndrome is a neurobiological health impairment and should be recognized as such by IDEA. (Emphases added)

Connors repeats that TS is a neurological condition and neglected, underserved and misunderstood; by now, the audience anticipates these characterizations. As a result and having internalized the definition's key points, the audience concurs that placing students with TS in ED makes no sense. Touretters will be better served by OHI.

That said, Connors can now focus on the disciplinary consequences of classifying Touretters as ED.

Discipline provisions in the law should be written so they do not require punishing children for the expression of TS symptoms. We acknowledge that any behavior that is harmful to others must be controlled and that students with TS are responsible for their behavior. However, tics, both vocal and motor, are very frequently misinterpreted as bad behavior or intentional classroom disturbances. Tics are not bad behavior. Tics are uncontrollable neurobiological events. Decisions by educators addressing behavioral issues need to be based on a correct understanding of how TS affects behaviors. There are environmental accommodations and other techniques that can be used to maintain appropriate behavior. For example, a simple modification that allows the child to take a short break out of the classroom during each class enables the child to release tics in private without embarrassment. Frustration does not build and behavior in general improves. This is a more positive outcome where everybody wins. (Emphases added)

On the one hand, Connors continues to couch her discussion, here regarding discipline, in terms of the subtle and misperceived attributes of TS. On the other hand, she refers explicitly to TS's familiar manifestations, in order to ground her statement against inappropriate discipline. As she states, "Tics are not bad behavior." Connors does acknowledge that all students are responsible for their behavior. But, she quickly dismisses any association between TS and intentionally disruptive actions. The strategy fulfills the audience expectations in another way: they already understand that the gestures Touretters may present are not the problem; their sensory, health, and neurological differences are best accommodated as OHI. By describing an appropriate modification, she demonstrates her points and ends on a positive note.

Overall, Connors uses carefully selected repetitions and omissions to redefine TS. By repetition, she associates the disorder with neurological difference; by downplaying TS's stereotypical symptoms as inaccurate, she dispels TS's links with behavioral and conduct disorders. Because TS's symptoms are neurological events, it should be classed in OHI with other health and sensory impairments such as epilepsy and ADHD. A credible witness on several levels, Connors attempts to redefine what TS is in educational law also functions, in a sense, antithetically; once incorrectly considered a socially disruptive behavioral problem, TS is about neurological difference which, if misunderstood, can not be treated fairly.

Supporting Repetitious Documents

Connors' testimony offers a template for five years of public deliberation by TSA to place TS in OHI in IDEA. In each deliberative venue, TS is characterized as a neurological condition rather than as a behavioral or conduct disorder. In so doing, the material contributes to the cumulative effect of TSA's deliberative effort. To demonstrate this strategy as it pertains to IDEA, I want to mention a set of documents, looking at its relationship to Connors' testimony and to its deliberative aftermath.

Beginning in 2005 and typical of advocacy campaigns, TSA provided its members nationwide with templates for six separate letters about IDEA, these to Secretary Spelling of the Office of Special Education and Rehabilitative Services (DOE); state senators; state representatives; federal senators; federal representatives; and, for parents, to their child's school. Each version follows the same pattern as Connors' 2001 testimony. Each letter moves from an introduction; to an objective statement of TS's health, sensory and neurological differences; to a personalized message focusing on unseen characteristics and the inappropriate consequences of that misidentification; to an argument for OHI as appropriate classification; to a conclusion. Each letter repeatedly characterizes TS as a neurological, misunderstood, and non-purposive phenomenon rather than as inappropriate behavior. Each emphasizes the magnitude of this misdefinition for the child. Three paragraphs are of particular interest here because they appear in each of the six letters each sent by the thousands from TSA members nationwide. I include the paragraphs at length because, as part of the ongoing process of repetition and redefinition, my audience will understand by reading them that they have already internalized the discussion and associated definition.

The classification category frequently dictates the placement, services provided and behavioral intervention plan. TS is a medical condition caused by a chemical imbalance in the brain. Many educators, however, continue to erroneously see TS as a behavioral or conduct disorder because of the bizarre nature of its symptoms and therefore classify these children under the Emotionally Disturbed (ED) category. This incorrect classification frequently results in students being placed in programs that are designed for students with emotional disorders where bullying and teasing generally increase as does the punishment for their symptoms. The outcome is devastating and often results in a student dropping out of school. It is our strong belief that if TS were appropriately listed under the category of OHI, the numbers of classified students would not increase, but rather the numbers of drop outs would decrease.

Reward and consequence based interventions are used in ED behavior plans as motivation to change inappropriate behaviors and to encourage more socially appropriate behaviors. Because students with TS do not have control over their symptoms, a program that is based on punishment and reward is inappropriate and ineffective just as it would be for students with seizure disorders. For many students, even those with significant symptoms, the appropriate classification of OHI results in appropriate services that make it possible for them to remain in a general education setting. For some students with significant symptoms, classification of OHI may eliminate the necessity for costly residential placements.

Given the proper classification of OHI for a student with TS, emphasis will be placed on effective teaching strategies and techniques and environmental modifications that do not involve punishment rather than behavioral modifications for uncontrollable symptoms. This will help the child to develop life long coping and management skills, all of which will lead to effectively improving the functioning of the child as a student and as an adult. (Emphases added)

As the emphases indicate, the letters repeat the same general information as the Connors testimony. There are a few differences. Because this is a letter and not a speech, the tone is more cordial. Some additions appear. TS is explicitly associated with seizure disorders. And, because this is at the end of a long redefinitional process, Connors states outright what TS is and what it is not. The shift in definition has occurred, it seems. It is neither by coincidence nor by laziness that the same material appears in some form throughout the documents produced and disseminated by TSA and advocacy and legislative purposes. Repetition produces an emphatic and cumulative effect within and across the documents.

Similarly, children who advocated to Congress on Capitol Hill were provided with these templates into which to insert their personal stories. And, in a memo to members of TSA of May 3, 2005, Jeremy Scott, Director of Public Policy, summarizes several legislative issues. His discussion of IDEA simply reproduces intact the letter template without the personal statements.

In November 2004, the House and Senate reached agreement on IDEA and passed it on into law on December 3rd. Implementations procedures to place TS as OHI were put in place on August 3, 2006 ("Building the Legacy: IDEA 2004"). According to the report:

Changes: We have added Tourette syndrome as an example of an acute or chronic health problem in Sec. 300.8(c)(9)(i)….The definition of other health impairment in Sec. 300.8(c)(9)(i) has been changed to add "Tourette Syndrome" to the list of chronic or acute health problems.

As this statement acknowledges, TS, in particular, is a health (not a behavioral) impairment and, as such, should be included in the OHI list. Moreover, according to the discussion:

The list of acute or chronic health conditions in the definition of other health impairment is not exhaustive, but rather provides examples of problems that children have that could make them eligible for special education and related services under the category of other health impairment. We decline to include dysphagia, FAS, bipolar disorders, and other organic neurological disorders in the definition of other health impairment because these conditions are commonly understood to be health impairments. However, we do believe that Tourette syndrome is commonly misunderstood to be a behavioral or emotional condition, rather than a neurological condition. Therefore, including Tourette syndrome in the definition of other health impairment may help correct the misperception of Tourette syndrome as a behavioral or conduct disorder and prevent the misdiagnosis of their needs. ("Building the Legacy: IDEA 2004"; emphasis added)

As the report acknowledges, TS has been misunderstood and miscategorized as behavioral or conduct disorder. Because of the severity of this past problem and the misunderstandings associated with it, TS will be explicitly placed in OHI and named outright; other known health problems that fall into this category do not need to be so named.

Lawmakers attribute this success in large part to the students (rather than parents or adult Touretters) who testified before Congress ("Building the Legacy: IDEA 2004"; Scott, 2006). Their personal and emotional efforts certainly helped. But, the core of the successful effort lies in redefinition through strategic repetition.

Conclusions

Although IDEA still frames TS within a medical model, its recent redefinition represents a groundbreaking change for those who identify as Touretters. Located in the DSM for over 25 years, TS has been understood as a behavioral or conduct disorder that is manifested in inappropriate behaviors and treated as if it were in educational settings. Unfortunately, this perspective harms the students and neglects their experiences as well as recent neurological research. To correct these misperceptions and attendant educational problems, TSA deliberated for over five years in the public forum to change how TS is understood in special education law by shifting how TS is defined, suggesting what it ought to be. As they so often stated, in this educational context TS is a neurological impairment whose greatest impediments are subtle but devastating, especially because they are so misunderstood. TSA's deliberative success attests to the significant role definitions play in framing arguments and to the importance of paying explicit attention to such word uses.

I hope that this case provides a model for other organizations to advocate for change on practical and conceptual levels. To think definitionally is to rethink whole categories working from the bottom up; to deliberate accordingly in public contexts provides an opportunity to set up expectations, to support them, and to change future thinking and actions. The future lies in educating the students and teachers about these changes.