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Double Inequity, Redoubled Critique: Twice-Exceptional (Gifted + Learning Disabled) Students

Double Inequity, Redoubled Critique: Twice-Exceptional(Gifted + Learning Disabled)

Students, the Equality Ideal, and the Reward Structure of the Educational System

The following paper was presented at the 2001 annual meeting of the American Anthropological Association, Washington, D.C., as part of a session sponsored by the Council on Anthropology and Education devoted to the theme of "Framing, Defining, and Analyzing Inequality: Dilemmas and Innovations."

by Margi Nowak

I- Introduction

As anthropologists deeply concerned with societal oppression and the consequent suffering of human beings, specifically, those in and affected by formal educational institutions, we already recognize that neither the label "gifted" nor the label "learning disabled" is ever bestowed on a student in a sociocultural vacuum. Indeed, we readily acknowledge that such loaded terms of reference are constructions rather than verifications of essential characteristics, and we might even suspect that mechanisms of social reproduction are probably at work when this, rather than that, child "gets" -- with or without parental help -- the more socially esteemed or socially stigmatizing label. What may be less obvious, however, is the tangle of experiences and perceptions that can inspire certain parents to fight long and hard battles with the educational system to get both of these seemingly dichotomous labels officially applied to their children. What prompts this struggle to have one's child officially labeled as "twice-exceptional," [1] and how can these contestations shed further light on the questions we are seeking to explore today?

It is the purpose of this paper to attempt to address this topic in connection with the general theme of this panel, focusing specifically on the situation of children who, in purely statistical terms, might be regarded as being doubly abnormal. [2] More specifically, the "non-normalcy" of these students in the educational system may be seen as a result of their simultaneous position -- publicly verified by formal evaluation processes -- at both the "surplus" as well as the "deficit" ends of a continuum of performance traits deemed relevant in the school setting. That being said, the anthropological focus in this paper will not be on the purportedly objective scores and standard deviations that supposedly "prove" these children's dual exceptionality, but rather on the subjectively authored and judiciously shared contestation stories which certain key individuals -- in particular, the parents of these students, as well as other adults similarly affected by dual exceptionalities -- share with carefully selected others about these students' often profoundly painful experiences in this social arena. [3] These narratives invite us to look more closely at the way this dichotomous label "twice-exceptional" is constructed, authorized, and strategically employed, ultimately leading us to pay more careful attention to the significance of the difference, in the educational system, between the ideals of equality and equity.

II - Constructing the Label of "Twice-Exceptional": What Are the Components of the Fabrication?

Even in cases where a child's educational performance is noticeably different from that of age-peers, but without any trace of a learning disability, the parents of such a child may have to contend with the sobering realization that "too much" difference from the norm -- even in the presumably "good-to-have" direction -- can actually be socially problematic. Parents of children who, for example, on their own, crack the code of alphabetic letters and proceed to begin reading at age two, may find themselves roundly criticized for "pushing" their child to read just to satisfy their own egos. Likewise, parents of children who, with spontaneous passion, try to spend much of the day manipulating and playing with complex mathematical concepts, or who seem self-driven to express themselves artistically with inner confidence, sophistication, and resistance to standards imposed from outside, soon learn that such children's "excessive" divergence from the intellectual or artistic performance norms of their age-peers can sometimes make their children, themselves, and their parenting subject to barely disguised hostility.

Once such children enter the formal education system, the desire of their parents to have their child officially tested may thus represent a defense strategy at least as much as a means of gaining positive recognition or status. For the children who succeed in attaining this, the label "gifted" might even bring with it not only a validation of the child's right to be "different" intellectually (which often involves special or enriched curricular offerings,) but often (and perhaps even more importantly,) a greater tolerance for whatever social quirkiness they may exhibit as well. Furthermore, despite all the negative consequences of ability tracking for large numbers of children, for some particular children whose differences are little appreciated by their age-peers or even their teachers, being grouped with presumably similar children as the result of the "gifted" label can also give them their first hope of being somewhat more protected against being bullied and/or experiencing serious depression. 

For such reasons, then, the label "gifted" is eagerly sought by those parents who see its advantages not only in terms of potential curricular bonuses, but also as a means of providing defense and protection against attacks and criticism of their child and their parenting. For such parents (that is, those whose children are different, but only in the "surplus" direction,) the process by which this label is created and applied tends to be regarded as largely transparent: the child is tested, and if his or her measured performance on relevant standardized tests is high enough or strong enough, then the resulting score is regarded by people within and outside of the school system as "proof" of the child's positive and significant difference from the norm. In such cases, the label "gifted" is thus, all things being equal, constructed out of needs, values, and assumptions that "naturally" seem to support each other, especially in a culture that strongly espouses meritocratic ideologies.

To some degree, a parallel but definitely not identical process can be seen in cases where a child ultimately receives the single (i.e. not doubly exceptional) label "learning disabled." Even if the parents' emotions in this situation are likely to be much more complex and divided in this scenario -- involving both relief (at the hoped-for prospect of finally getting needed accommodations and services) and sorrow (over the loss of their idealized dreams for their child's future) -- there is still a strong possibility that the way in which the child was labeled as "learning disabled" will likewise be regarded by people within and outside of the school system as a "natural" consequence of that child's "objective" discrepancies -- here, in a negative direction from the norm -- as measured and "proven" by test performance and scores.

But sometimes, the situation is considerably more complicated. In the case of children whose differences from the norm point to both the "surplus" as well as the "deficit" ends of the continuum, it is extremely likely that standard measures for "catching" such discrepancies will be inadequate, for this kind of student's two opposing tendencies (testing "too high" in some contexts while performing "too poorly" in others) often mask each other. Thus a child who is capable of understanding calculus in elementary school but who also is dyslexic may never be able to perform well enough on the kinds of tests gatekeepers use to let in or exclude students to special programs for the "highly capable," yet at the same time, such a child may have figured out partial compensating strategies for the disability, resulting in standardized scores just high enough to prevent the disability from being acknowledged. [4] In some situations like this, neither the child nor his or her parents might even suspect the simultaneous occurrence of giftedness and a learning disability, and that child's school career may well proceed with only mild or occasional notice being paid to puzzling and paradoxical differences between various measures of ability and performance. In other cases, however, the child's distress and pain during the school year may be so acute and obvious to the parents, and the official response of the school might be so critical of not just the child, but also the parents' expectations and parenting, that the stage will be set for protracted battles concerning this child's "failure to perform according to potential." For this struggle, it is not enough for the parent to simply construct adequate labels for her twice-exceptional son or daughter. She [5] must, if she is facing an unconvinced school district, principal, or teacher, seek to construct them on the basis of some sort of convincing authority.

 III - Authorizing the Label of "Twice-Exceptional": Who Are the Experts?

For parents in this situation, faced with a son or daughter who is over and over called "lazy," "disruptive," "poorly motivated" and other such names by school personnel, the course of action, if they intend to stay within the public school system, seems obvious in cases where the family has sufficient financial and cultural capital: seek to trump the school system's labeling and sorting process by paying privately for testing by credentialed experts who are not associated with that school district or system. [6]

While some parents do engage in precisely this strategy to try to challenge, change, and then authorize the new labels and placements they feel more adequately suit their child, this is a course of action that is definitely not open to all (nor does it even guarantee the label change the parents are ultimately seeking). A considerable financial outlay, easily four figures, is required to pay for private testing by, for example, a neuropsychologist, who -- in comparison with the school district's stretched-too-thin educational psychologists -- will probably be more familiar than his or her public school counterparts with the neurology of, and individualized workaround possibilities for, students who are both "gifted and learning disabled." A family that has this kind of knowledge, access, and money to make use of a private evaluator and who is already dissatisfied with the public school system, might simply decide to search out a private school where their child's dual exceptionalities might be better tolerated if not served, regardless of the label. [7]

For families without the resources to find and pay for an alternative, "outside-the-system" authority, however, the most likely source of help to challenge the school's blame-casting interpretation of their child's differences from the norm will be support groups composed of other parents who are struggling with, or who have already experienced, similar problems. While some of these groups do meet regularly and locally in a face-to-face manner, allowing members to share their experiences with their regional school districts and state personnel and learn constructive strategies from each other, another form of support group has come to play an even more significant role in this endeavor. Within the last decade, the number of parents who use Internet-based support groups for this purpose has grown astronomically. [8] In this context, where "the supporting group" can be both an international as well as a moral community in a Durkheimian sense (religiously self-policing themselves so as to avoid sharing with outsiders the private, often deeply personal information about children and families posted on disability-specific online listservs, for example,) parents seeking support to challenge the authority of their school system can make use of several different conduits of information.

First, other online parents can share their "triumph stories," especially in response to the plaintive request of "new" individuals participating in the online support group who are just now beginning to find themselves in the sorts of difficulties which other families have already encountered and lived through. Personal stories of this type shared in this way not only give hope, but they also often point to legal precedents as well. For example, parents of twice-exceptional children being denied disability services because "the child is still performing at grade level" are quickly directed, by relevant online support networks to one of several online references to a 1995 North Carolina Letter of Clarification from the Director of the Office of Special Education Programs which states that "a student cannot be excluded from consideration of eligibility for special education services solely on the basis of a high IQ; no child's IQ can be too high for that child to be considered for eligibility for special education services -- even an intellectually gifted student may be considered for eligibility for special education." [9]

A much more subtle and profound sort of challenge to the school system's authority to define and label -- as "lazy" instead of "learning disabled," and/or as "performing at grade level" instead of "gifted" -- can come from another category of contributors to these listservs: adult survivors of their own mislabeling in the school system. Numerically much less common on these listservs than parents of children with dual exceptionalities, these adults nevertheless occupy a status in their support group not unlike that of tribal elders, whose relatively rare discourses and orations are all the more listened to because they are not the daily fare.

One powerful message such individuals proclaim -- usually in direct contradiction to a school-authored reply to a parent that "your child is just making up" stories of pain and harassment -- is to "believe your child." Using the abbreviation NT to stand for "neurotypical" -- a neologism used with skilful humor and irony on at least one website that parodies the somber pontifications of the Diagnostic and Statistical Manual of Psychiatric Disorders [10] -- a man who was horrendously mocked and abused in his student years because of his invisible neurological disability wrote this response to a (non-disabled) parent who had scolded -- online -- another listmember for having been "too angry" at the memory of her own very unhappy childhood (affected by the same disability as her child):

You, you NTs, you don't have a damn clue. You have no concept of what a clique will do to a misfit when they can get away with it. You never got kicked down flights of stairs. . . You never had people drive staples into your back. . . You never had to walk home with the front of your pants soaked by a bunch of sidewalk thugs with water pistols. . . You never heard a class tell a gym teacher that if they got you on their team then they had to have two free picks, and the teacher stood for it . . .You never got raped in a locker room . . .You never lived in a way that made that normal. [11]

Other online narratives and constructions by adults with these sorts of invisible disabilities, shared with parents currently fighting to obtain what they consider more appropriate services and placement for their twice-exceptional child, may hit these parents with less immediate emotional force than the quotation above, but they still can potentially provide these parents with a reality-altering perspective that may stiffen their resolve to challenge the schools' final authority. For example, the pseudonymous author of the ISNT website referred to above offers the following final comments:

About a year ago I learned that I was on the autistic spectrum. Inspired by this discovery, I read everything I could get my hands on about the autistic spectrum. Much of it makes sense -- for the first time in 41 years, I had a description, albeit an unexpected one, that fit me.

But a lot of what I've found out there, mostly written by "experts" and "professionals," has been arrogant, insulting, and just plain wrong. . .

My brain is a jewel. I am in awe of the mind that I have. . . [12]

The first time a parent of a twice-exceptional child reads such a statement, she may not be at all ready to engage in a complete remapping of her expectations and assumptions about professional expertise and knowledge. In fact, it is indeed possible for such a parent to spend years fighting the school district for appropriate services while using as weapons the counterclaims of authorities such as doctors and neuropsychologists, who, while they may be outside the school system, are still very much a part of the same hierarchy of knowledge transmission. But on the other hand, other parents (perhaps because some of them have "shadow syndrome" occurrences of the same disability their child has) are more open to an alternative construction of expertise. While these parents will probably never give up entirely their respect for the superior specialized knowledge of medical and educational professionals, they may indeed find themselves more and more drawn to the alternative interpretations and explanations of those highly articulate "insiders" who have the same disability as their son or daughter.

For such people, both parents and students, one of the critical rallying cries of the disability movement -- "We are not "broken," so don't keep trying to "fix" us -- makes more and more sense. [13] Furthermore, the fact that some of these students who are "twice-exceptional" are already predisposed to be resistant to outside standards of excellence makes this struggle over expertise even more interesting.

IV Contesting the Reward Structure of the Educational System: Who Wants to Be Valedictorian Anyway?

It would be facile in the extreme to suggest that a major defection is taking place among parents and children with dual exceptionalities, and that, given enough Internet exposure to the counter-hegemonic narratives of articulate persons with disabilities plus giftedness, such students and their parents will no longer care about the ranked rewards the educational system holds out to its winners: scholarships, grade point averages, recommendations, and other such honors. In fact, the opposite is generally true. One of the most deeply appreciated types of stories shared on support listservs are the "triumph narratives" which proclaim and celebrate the achievements of students who finally gain public recognition (perhaps even bestowed by non-local, highly prestigious institutions such as the National Merit Scholarship Program) despite having been labeled earlier in their school careers as headed for nothing but trouble and failure. Even for those families whose twice-exceptional sons and daughters will never attain such honors, the realization that the educational system acts as a sorting mechanism for assigning future income-earning potential to its graduates means that the vast majority of parents fighting for their twice-exceptional children will still do all in their power -- including accepting the full weight of the "disability" label -- to try to tip the balance in favor of their child "getting good grades."

But in some few cases, despite the parents' best efforts to encourage their child to navigate successfully past the key gatekeepers in the educational system, the twice-exceptional student him- or herself will have put together a worldview that is quite impervious to outside standards. For such students -- who may have been able to survive into their late teen years only and precisely because they earlier managed to develop an exceptionally strong and resilient inner core [14] -- the pressures to conform exerted by the schools and their personnel, by other students, and even by their own caring parents may still not be enough to convince them of the value of striving to achieve the system's rewards. Some of them, like Akmir, the fiercely resistant Black Muslim hero of Herbert Kohl's essay "I Won't Learn from You" [15] , will end up tragically -- in this case, dying of a heroin overdose in an emergency room of an inner-city hospital. Others, through luck or by fate, might have a chance to end up more like some of the hope-affirming examples often cited in Internet conversations within the "twice-exceptional" community: Albert Einstein, who was once considered mentally retarded; Steven Spielberg, who dropped out of school as a high school sophomore, was persuaded to come back and placed in a learning disabled class -- where he lasted one month before leaving school forever; Winston Churchill, who failed sixth grade and needed three attempts to gain acceptance at Sandhurst; and Pablo Picasso, who left school forever at age 10, refusing to learn math and wanting to do nothing but paint. These "failures" and "resisters," both the famous and the totally unknown, challenge us to look anew at what we think we know and want to strive for when we talk about creating a more just and fair system of evaluating and rewarding "success" in the educational system.

V Conclusions: Equity, Not Equality 

From the purely pragmatic (rather than ideological) viewpoint of the parents of twice-exceptional students, what they desire is a less emotionally painful, less intellectually wasteful, more hope-affirming and ultimately more life-affirming educational experience for their undeniably "different" sons and daughters. For them, this often necessitates a struggle they must fight against school officials to obtain a dual label for their children -- "gifted" as well as "learning disabled" -- which would ideally bring forth both needed remedial services and/or accommodations for the disability as well as what could literally be life-saving support for and affirmation of the child's special talents and abilities. Clearly, despite all the positive rhetoric about "inclusion" and "mainstreaming children with disabilities" -- which inspires many (though by no means all) parents of children with "single" exceptionalities (i.e. disabilities alone, without "giftedness") -- these parents of twice-exceptional children in no way see the educational goal of "treating all children equally" as one that would benefit (or in some cases, even tolerate the existence of) their particular son or daughter. Their rejection of the equality ideal, far from being based on a snobbish concern for claiming a socially prestigious status or difference ("giftedness",) stems instead from their experience: that, in far too many cases, the positive rhetoric of "inclusion and equal treatment for all" hides an incapacity, at the structural level of most school systems, to address the complex, demanding, and above all, multitudinously different needs of all the "non-normal" children who threaten the smooth and predictable workings of "normal" classrooms. Furthermore, without ever having read Walter Secada [16] , these parents sense that the quantitative underpinning of the goal of "equality" (e.g. "in each classroom there will be one computer for every four children," or "every child who receives two warnings for bad behavior will be denied recess on the third offense") can actually have the effect of making "equality" bring about treatment that is unfair in some cases. (What about the child with severe dysgraphia who needs to use a keyboard full-time in order to complete all and any written work? What about the child with excellent hearing who has an auditory processing disorder and therefore only "hears," but does not process the warnings?) 

What such parents would strongly support as an educational goal, however, is the ideal of equity, that is, a qualitative (and hence "messier," more subjectively determined) attempt at being fair that takes into account individual needs and differences, often by deliberately treating some children unequally (e.g. allowing a student with an attention prioritizing disorder to have extra time to complete exams, or regularly giving pre-warnings before a fire drill to a child who has sensory integration problems). The paradox here -- that greater social justice and fairness may actually be brought about by deliberately treating individuals not equally, but in different ways, according to their different needs -- is of course one that has already been acknowledged (thought not without contention) in the context of (ideally temporary) affirmative action measures designed to redress the cumulative effects of previous discrimination against specific groups. 

But twice-exceptional students with the kinds of exceptionalities discussed here will never constitute an "ethnic" or "class-based" kind of a collectivity, nor is it at all realistic or even pertinent to imagine a future when such students will finally achieve "parity" with those who are more "normal." Indeed, the very first word of the federally mandated program designed to provide needed services for qualified students with disabilities in the educational system is "individualized" -- as in "Individualized Education Program" (or IEP). [17] But here too the gap between rhetoric and reality can be great, with the actual delivery of these supposedly individualized services and accommodations not at all a sure thing (despite the law that purportedly guarantees them,) because of a host of contingencies and competing demands that militate against genuinely individualized education within large bureaucratic structures. [18]

Nevertheless, parents of the twice-exceptional students who stay in the public school system feel they must continue to fight, if not for a truly appropriate program, then at least for their child's protection (against ignorant and/or disbelieving teachers belittling their child's ability/performance gap, and also against their child's age-peers bullying "the class weirdo",) and for or better or worse, the dual label "gifted with learning disabilities" is the best construction available for them to try to appropriate for this purpose. 

As for the adult survivors who take the time and trouble to articulate their stories, share their insights, and make their criticisms of the educational system available to all the parents who are frantically, even desperately searching the Internet on behalf of their child, these people can be seen as a doubly invisible [19] subgroup of a larger group with which they may not even be familiar: the Disability Rights Movement. Activists in this larger, more adult-oriented group, fighting under the more inclusive legal banner of the Americans with Disability Act (rather than the Individuals with Disabilities in Education Act, which authorizes IEPs, but which only applies to the education of students with disabilities through their completion of high school) have as their rallying cry the motto "Nothing About Us Without Us!." Central to these people's demands is a reordering of relations of control, starting with the all-important issue of their seizing control of the authority to define for themselves the nature of their disability-related problems. 

Disability Rights Movement slogans and phrases such as "the right to be disabled" and "the tyranny of rehabilitation" [20] have not yet made their way into the discourse of parents fighting for an appropriate education for their twice-exceptional child. Nor has there been much if any contact, idea-sharing, or mutual support among the various groups of "resisters" affected by disability [21] : the militantly political and theoretically well-armed and organized activists who are often motor-impaired and thus "obviously" disabled; the parents of children with largely invisible learning disabilities; and finally, those relatively few twice-exceptional students who reject their "rehabilitative duty" and instead try to protect themselves against self-doubt, self-hatred, or even suicide by refusing to buy into the education system's reward structure. These most "troublesome" children in our schools, the paradoxical "square pegs" who will never earn system-wide approbation and commendation for their often profound individual gifts, challenge us not only to accept diversity in its least predictable, least convenient forms, but also to be wary of idealizing the goal of equality when what we really need, if we want to strive for greater social justice and fairness, is a collective struggle for greater equity [22] in the educational system.

Notes

[1] This particular label occurs in slightly different forms on several key Internet sites. The website for ERIC (Educational Resources Information Center) used the phrase "Dual Exceptionalities" ( http://ericec.org/); Hoagies Gifted Education Page (http://www.hoagiesgifted.org/) uses the term

"Twice Exceptional" http://www.hoagiesgifted.org/twice_exceptional.htm ; and the listserv GT-Special ("gifted and talented with special needs") exists for parents to talk about "any gifted child who has a learning disability (LD) and/or other neurological problem(s) that interfere with the child's ability to reach the full potential of his or her giftedness." (http://www.gtworld.org/gtspeclist.html). The co-founder of this electronic mailing list also maintains a site called "Uniquely Gifted - Online Resources for Families with Gifted/Special Needs Children" (http://www.uniquelygifted.org/)

[2] This paper is based on a multi-lensed mode of participant observation that has -- for over a decade -- focused on the author's "insider's" experiences as a parent/advocate; on her "semi-insider's" perspective as an informal advocate or consultant for other twice-exceptional students; on her less subjectively involved membership in online discussion groups, (print) newsletters and face-to-face support groups; as well as on theoretically informed university course preparations and readings in the areas of disability studies and critical pedagogy.

[3] Since much of the first-person material available to me in my role as fellow parent is regarded by specific online support groups as private information, not to be shared with "outsiders," I will only be citing accounts that are already published or for which I have obtained permission to use anonymously. One of the best first-person accounts of the suffering of twice-exceptional students available in print form is an essay by Deborah Robson -- "Optimism Beyond Reason" -- which is published in Uniquely Gifted: Identifying and Meeting the Needs of the Twice-Exceptional Student, edited by Kiesa Kay (Gilsum, New Hampshire: Avocus Publishing, Inc. 2000). In it, Robson acknowledges the depth of the pain experienced by mislabeled and misunderstood students like her own daughter, further adding these personal references: "I'm writing for Austin, fourteen, veteran of two trips to the adolescent psych unit for depression." "I'm writing for Ozzy, who died at seventeen." "Oren committed suicide at thirteen. . . " (2000: 23, 30).

[4] See ERIC Digest #479: "Gifted but Learning Disabled: A Puzzling Paradox" by Susan Baum ( http://www.ed.gov/databases/ERIC_Digests/ed321484.html) 

[5] The choice of the female pronoun here is not only influenced by the rhetorical desire to avoid stylistic awkwardness, but also by the fact that is it overwhelmingly mothers who spent the most time participating in the constant and exhausting negotiations between home and school. Indeed some fathers do play an immensely supportive role in advocating for their child this way, but they are the exceptions and not the norm.

[6] A reasonable question here -- why would a school system tend to be wary of a parent's efforts to secure a presumably more accurate "twice-exceptional" label? -- can be at least partially answered in terms of a Weberian insight about bureaucracies: they do not easily embrace even single, much less double exceptionalities! 

[7] Putting a twice-exceptional child in a private school does not always change the negative judgments made by school personnel and other students about such a child. For families who are able to homeschool (including those who are unable to pay for private schooling in the first place,) this is often the last (and most hopeful) option.

[8] To give one example of this kind of growth, in the spring of 1995 a mother of a then pre-teen with Asperger Syndrome, searching for information on what was at that time a little-known condition, began a private listserv for "parents of" and "adults with" AS. From this group of a few hundred individuals, a website originally called Asperger Syndrome Resources was created in December of that year. From that developed the enormously resource-rich OASIS website (http://www.udel.edu/bkirby/asperger/,) which has had over 1.2 million hits in its first five and a half years online, mostly by parents who leave messages such as this one in the Guest Book: "I have just learned my son, 13, is considered to have Aspergers/ autism. I am gathering info and finding my heart cry as I read about my wonderful child who gets so misunderstood.

[9] Letter of Clarification from Thomas Hehir, Director, OSEP, to Ms. Patricia M. Lillie and Rebecca Felton, PhD, Learning Disabilities Association of North Carolina, Inc. dated April 5, 1995, cited on the Learning Disabilities Association website, (http://www.ldonline.org/ld_indepth/gt_ld/lda_advocacymemo.html)

[10] For those familiar with the DSM-IV, the organization of the website called "The Institute for the Study of the Neurologically Typical" (http://isnt.autistics.org/) is an extremely accurate reproduction (and dead-on sarcastic parody) of "the real thing."

[11] The individual who gave me permission to use this quote, unattributed, was, at the time he wrote it, "passing" in a job requiring high intelligence and creativity. His disability, which he has learned to hide better now than when he was a child, is still a factor he must contend with, since it is one which fundamentally impacts facility in social interactions.

[12] Institute for the Study of the Neurologically Typical (http://isnt.autistics.org/)

[13] People with disabilities who use this phrase are not suggesting that they have no need of services or therapeutic interventions designed to make life easier for them, but rather, that the choice of what aspects of their being they intend to accept positively, without trying to "normalize," should be theirs and not the choice of some outside agency.

[14] Jane Meyerding, a woman who describes herself as "self diagnosed and peer confirmed" with Asperger Syndrome, has published an online article, "Thoughts on Finding Myself Differently Brained" in which she describes a discovery she made about humankind that once surprised her: "Some of us are solid core. . . and some of us are hollow core. The hollow cores need outside help to find the proper center of gravity that will allow them to orient themselves in society" (http://www.inlv.demon.nl/subm-brain.jane.eng.html) 

[15] Herbert Kohl, I Won't Learn from You and Other Thoughts on Creative Maladjustment, New York: The New Press, 1994.

[16] Walter Secada, an education reformer, mathematics and science education professor, and former director of the Hispanic Dropout Project, has researched and written extensively on the topic of equity and equality in education. See "Educational Equity versus Equality of Education: An Alternative Conception" (68-88) in Equity and Education, New York: Falmer. 1989. 

[17] An outstanding article written by a law school professor who is also the parent of a child with a disability -- "Origin Myths, Narratives of Authority, Resistance, Disability, and Law" by David M. Engel, Law and Society Review, Vol. 27, Number 4 (1993,) 785-826) -- analyzes structural reasons for the annual IEP meeting being, unavoidably, a profoundly asymmetrical (and ultimately unwinnable) contestation between parents and school professionals where "the mythic themes of authority and resistance are re-enacted."

[18] Ibid. 

[19] Not only are their disabilities largely invisible, enabling many of them to "pass" as relatively normal adults, but in addition, few if any "obviously" disabled activists are even aware of such people's collective existence, let alone their significant role in changing the consciousness of parents regarding the right of invisibly disabled children to "be themselves" first.

[20] See the website Axis -- The Point of Balance: Inclusive Education for Disabled Students created by disability advocates Norman Kunc and Emma Van der Klift (http://www.normemma.com/) for position papers explaining this point of view. 

[21] A troublesome secret openly acknowledged by a few thoughtful and concerned people with disabilities is the degree to which, as one person with mental health problems wrote, "The more functional someone becomes, or is, the lower he/she sinks in standing [among other people with more obvious disabilities]." See David Moison's, online article "Clubhouse Essays: Is Clubhouse Philosophy Breaking Down?" ( http://www1.shore.net/~dmoisan/essay/notdisabled.html). A similar point is made in an essay by Victoria Medgyesi, "Crip Caste: Owning Up to the Pecking Order and Prejudice with the Disability Community" (http://www.newmobility.com/review_article.cfm?id=65&action=browse). Of course the reverse is true as well: people whose disabilities are so invisible that they can manage to pass as normal in many contexts are usually very leery of publicly identifying with, let alone learning strategies of political activism from those people who may be most proficient and experienced in this respect, but who, alas, are much more obviously deviant in their physical appearance. 

[22] Walter Secada acknowledges a further complication in this respect, namely, that the word "equity" can actually evoke several different meanings: caring and empathy; socially enlightened self-interest; social justice, group-based statistical equality; more proportional representation; and even a kind of triage-inspired rescue mission to target "the most savable students" in the educational system. See Secada, "Conceptions of Equity," paper presented at the conference Equitable Education: Utopia or Realism?, Nordland Research Institute, Bodo, Norway, June 13-15, 2001.

Bibliography

A - Print Resources

Engel, David.(1993) "Origin Myths, Narratives of Authority, Resistance, Disability, and Law" (785-826) in Law and Society Review, Vol. 27, Number 4.

Kohl, Herbert.(1994) I Won't Learn from You and Other Thoughts on Creative Maladjustment. New York: The New Press.

Robson, Deborah. (2000) "Optimism Beyond Reason" (21-31,) in Uniquely Gifted: Identifying and Meeting the Needs of the Twice-Exceptional Student, Kiesa Kay. ed. Gilsum, New Hampshire: Avocus Publishing, Inc.

Secada, Walter, (2001)"Conceptions of Equity," presentation at the conference Equitable Education: Utopia or Realism? Nordland Research Institute, Bodo, Norway, June 13-15.

Secada, Walter. (1989) "Educational Equity versus Equality of Education: An Alternative Conception" (68-88,) in Equity and Education, Walter Secada, ed. New York: Falmer.

B - Electronic Resources

Axis - The Point of Balance: Inclusive Education for Disabled Students

Baum, Susan, ERIC Digest #479: "Gifted but Learning Disabled: A Puzzling Paradox"

ERIC (Educational Resources Information Center) Clearinghouse on Disabilities and Gifted Education

GT-Special - An Electronic Mailing List for the Families of Gifted and Talented Children with Learning Disabilities and Other Special Needs

Hoagies Gifted Education Page

Institute for the Study of the Neurologically Typical

Learning Disabilities Association Advocacy Memo: Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of Failure

Medgyesi, Victoria. "Crip Caste: Owning Up to the Pecking Order and Prejudice with the Disability Community"

Meyerding, Jane, "Thoughts on Finding Myself Differently Brained"

Moison, David. "Clubhouse Essays: Is Clubhouse Philosophy Breaking Down?"

OASIS (Online Asperger Syndrome Information and Support)

Twice Exceptional

Uniquely Gifted - Online Resources for Families with Gifted/Special Needs Children

About the Author

Margi Nowak, Ph.D. is a cultural anthropologist and author of several works on "liminal" types of people in society (e.g. refugees and persons with disabilities). These include Tibetan Refugees: Youth and the New Generation of Meaning, published by Rutgers University Press, and "Powered by Modem: New Challenges to Old Hierarchies in Special Education," published in the Review of Education/Pedagogy/Cultural Studies, Vol. 20, No 1. Dr. Nowak also served as the founding editor of Connections, the newsletter of the Washington State Tourette Syndrome Association. To contact Margi, send e-mail to: mnowak@harbornet.com

Other articles by Margi Nowak on our website:

Dealing with Difference: Diagnostic Labels, the Hunter-Farmer Metaphor, and Self-Referential Terms of Identity and Affiliation

Pain, Waste, and the Hope for a Better Future... "Invisible Disabilities" in the Educational System

This article is in the public domain and can be freely copied and used in trainings as handouts at parent and community meetings, and in creating your school or district programs. (Please cite all sources of materials you use.)

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