Thursday, June 13, 2013

"Defining My Dyslexia" in New York Times


Greetings, I want you to see the op ed piece in the New York Times written by Blake Charlton who was one of our speakers at the Dyslexia and Talent conference held in April.  -- All best, Tom west
           
May 22, 2013
Defining My Dyslexia
By BLAKE CHARLTON

SAN FRANCISCO — I STARTED cataloging insults in the second grade. Notable put-downs heard
outside my special-ed classroom included “dimwinky,” “retardochuckles” and “the meat in the
sandwich of stupid.” The last of which, if you think about it, is a seriously impressive use of
metaphor for a 7-year-old. I learned all the jokes about dyslexia, and told them to better effect than
anyone else. Making fun of myself was my best defense. The other choices — hiding from my
diagnosis or accepting myself as limited — didn’t appeal.

Fortunately, humor and hard work proved a good strategy. Also helpful were my crafty parents.
They often read out loud to me and, noticing my passion for fantasy novels, would stop at the most
exciting point in a chapter — then leave the book in case I wanted to read by myself. It wasn’t long
before I was sneaking paperbacks into study hall.

Though slow out of the gate — I couldn’t read fluently until 13 — I went to Yale, then medical
school at Stanford, and I published two fantasy novels with disabled heroes (think Harry Potter
and the Special-Ed Classroom). At every step, I used my diagnosis to my advantage, arguing that I
had succeeded despite being dyslexic. It helped me stand out. Now a growing body of research suggests that I was unintentionally lying.

Last month, at the Emily Hall Tremaine Foundation Conference on Dyslexia and Talent, I watched
several neurobiologists present evidence that the dyslexic brain, which processes information in a
unique way, may impart particular strengths. Studies using cognitive testing and functional
M.R.I.’s have demonstrated exceptional three-dimensional and spatial reasoning among dyslexic
individuals, which may account for the many successful dyslexic engineers. Similar studies have
shown increased creativity and big-picture thinking (or “gist-detection”) in dyslexics, which
correlates with the surprising number of dyslexic entrepreneurs, novelists and filmmakers.
The conference’s organizers made a strong case that the successes of the attending dyslexic
luminaries — who ranged from a Pulitzer-winning poet to a MacArthur grant-winning
paleontologist to an entrepreneur who pays a dozen times my student loans in taxes every year —
had been achieved “not despite, but because of dyslexia.”

It was an exciting idea. However, I worried that the argument might be taken too far. Some of the
attendees opposed the idea that dyslexia is a diagnosis at all, arguing that to label it as such is to pathologize a normal variation of human intellect. One presenter asked the audience to repeat
“Dyslexia is not a disability.”

Not a disability? My years of functional illiteracy suggest otherwise. Today’s educational
environment exacerbates dyslexic weaknesses. Schools misidentify poor spelling and slow reading
as a lack of intelligence; typically diagnose the condition only after students have fallen behind;
and too often fail to provide dyslexic students with the audio and video materials that would help
them learn. Until these disadvantages are removed, “disability” most accurately describes what
young dyslexics confront.

At the heart of the conference was the assumption that a group of advocates could alter the
definition of dyslexia and what it means to be dyslexic. That’s a bigger idea than it might seem. Ask
yourself, “What role should those affected by a diagnosis have in defining that diagnosis?” Recently
I posed this question to several doctors and therapists. With minor qualifications, each answered
“none.” I wasn’t surprised. Traditionally, a diagnosis is something devised by distant experts and
imposed on the patient. But I believe we must change our understanding of what role we should
play in defining our own diagnoses.

Before I went to medical school, I thought a diagnosis was synonymous with a fact; criteria were
met, or not. Sometimes this is so. Diabetes, for example, can be determined with a few laboratory
tests. But other diagnoses, particularly those involving the mind, are more nebulous. Symptoms
are contradictory, test results equivocal. Moreover, the definition of almost any diagnosis changes
as science and society evolve.

Diagnostics might have more in common with law than science. Legislatures of disease exist in
expert panels, practice guidelines and consensus papers. Some laws are unimpeachable, while
others may be inaccurate or prejudiced. The same is true in medicine; consider the antiquated
diagnosis of hysteria in women. Those affected by unjust diagnoses — like those affected by unjust
laws — should protest and help redefine them.

The past 50 years provide several examples of such redefinitions. In 1978, Susan Sontag’s “Illness
as Metaphor” demonstrated how the contemporary understanding and description of cancer
unfairly blamed patients. In the next decade, activists began their struggle to enlighten the medical
profession and society about H.I.V. More recently, the neurodiversity movement has changed how
we understand autism.

I believe that scientific evidence and social observation will continue to show that defining dyslexia
based solely on its weaknesses is inaccurate and unjust, and places too grim a burden on young
people receiving the diagnosis. A more precise definition of dyslexia would clearly identify the
disabilities that go along with it, while recognizing the associated abilities as well. If the dyslexic
community could popularize such a definition, then newly diagnosed dyslexics would realize that
they, like everyone else, will face their futures with a range of strengths and weaknesses.
Of course, if they would also like to confront their difficulties with wry humor and jokes about
spelling, I’d be O.K. with that too ... even if their jokes are funnier than mine.

Blake Charlton, the author of the novels “Spellwright” and “Spellbound,” will be a resident physician in internal medicine at the University of California, San Francisco’s School of Medicine starting in June.

Thursday, June 6, 2013

Panel on Talents of Dyslexics


Dear all, I have been meaning to post several things here. Lots of good things are happening lately related to better understanding dyslexia and talent. I will start with a short version of our proposal for a roundtable discussion to be held in Boston later this month at the annual meeting of the International Academy for Research in Learning Disabilities (IARLD). It summarizes various new developments and trends. Best wishes, Tom West
___________________

Revised Final Draft – June 6, 2013


IARLD Roundtable Discussion -- Boston, Mass., June 27-29, 2013

Special Talents and Successful Outcomes Among Adults with Dyslexia – Recent Developments

Thomas G. West, Henry B. Reiff, John W. Hagen, Nicole Ofiesh


Overview

From the time of the earliest researchers (in the 1890s) until Samuel Torrey Orton (in the 1920s) and Norman Geschwind (in the 1980s), the central puzzle of dyslexia has always been the linkage of high abilities in some areas with remarkable and unexpected difficulties and disabilities in other areas. For more than a century we have recognized this pattern, but have generally focused on only one aspect. With the best of intentions, we have learned much about how to fix the problems that those with dyslexia experience but we have done almost nothing to develop a deeper understanding of the varied and hard-to-measure talents and abilities that many also possess – although these same talents are seen as increasingly valuable in a vastly changed economy and workplace. Some suggest that this neglected research agenda could provide the greatest potential for substantial future research progress. This roundtable discussion will focus on the pros and cons of increasing research emphasis on the strengths and talents. This topic was discussed in a Roundtable in the IARLD Conference in Miami in 2010. Recent publications and targeted conferences suggest that the topic is rapidly gaining more serious attention than only three years ago.

The coordinators of this session have long been strong proponents of looking seriously at the apparent special abilities of those with dyslexia -- in all their great variety. However, the topic tends to be controversial. Some researchers and practitioners feel that there are really no special talents -- or rather, there are no talents that are valuable in a traditional academic context. Others are uncomfortable about discussing strengths and talents since it would confuse funding sources that are unwilling to provide support for investigations of strengths and talents rather than handicaps and deficiencies. Many individuals with dyslexia who have been highly successful with respect to scientific discovery, technological innovation or entrepreneurial business claim that their success, their accomplishments and their special ways of seeing come directly from their distinctive dyslexic way of thinking -- not in spite of their dyslexia. Some proponents argue that identifying and developing such talents is an important foundation for individual self worth as well as future educational and occupational success. Other proponents make a much greater claim -- that major contributions can be made to the larger (increasingly specialized) society by the distinctive ways of thought seen in many highly successful dyslexics: the rapid and insightful comprehension of extremely complex information; the propensity to avoid “group think” and deliver highly innovative solutions to fundamental scientific problems; the capability to see patterns completely missed by well trained and experienced professionals; the apparent unusual proficiency in visual thinking well suited to new and powerful information visualization technologies.

Recently, the study of the talents seen in those with dyslexia is gaining increasing interest among a small group of innovative researchers. Much has changed in recent years that would suggest that these initiatives may be much closer to taking place: a small but important conference of foundation heads, researchers and highly successful dyslexic individuals (with their families) took place in April 2013; the increasing influence of the “learning sciencies” and the “positive psychology” movement; efforts to integrate dyslexia research with work psychology research (in the UK and elsewhere); books, articles, blogs and websites devoted to “the dyslexic advantage.” The discussion will also focus on how young adults in the workplace can improve their quality of life through intentional development of the attributes of successful adults with learning disabilities.

The roundtable discussion will address the following issues:

(1) How do the early case histories underscore the existance of very high visual and spatial capabilities along with the difficulties that those with dyslexia frequently have with reading, writing, composition, memory or organization?

(2) How have recent technological changes begun to increase the value of the visual and spatial strengths that many adults with dyslexia exhibit just as they seem to make their  academic difficulties less and less important?

(3) What approaches need to be changed in the classroom – for dyslexics and non-dyslexics alike -- to support the individual strengths and gifts of each learner?

(4) With the reexamination of the traditional research focus on pathology and intervention, are we beginning to see that we are researching the wrong kinds of things – and that we should shift instead to understanding how persons with dyslexia can tap into special strengths that fit well in a transformed economy?

(5) Recent work on understanding diversity among persons in terms of cognition and competence provides good evidence that societal progress is dependent upon the multiple contributions from individuals with far ranging talents. How can we develop research and practice approches that maximize the benefit of high diversity in both education and work?

References

American Speech-Language-Hearing Association, 1985. Adults with learning disabilities: A call to action [Position Statement]. Available from www.asha.org/policy.
Eide, Brock L., MD, MA, and Fernette F., MD. 2011. The Dyslexic Advantage: Unlocking the Hidden Potential of the Dyslexic Brain. New York: Hudson Street Press.

Gerber, P. J., Ginsberg, R., & Reiff, H. B., 1992. Identifying alterable patterns in employment success for highly successful adults with learning disabilities. Journal of Learning Disabilities, 25, 475-487.

Goleman, D., 1996. Emotional Intelligence: Why it can matter more than IQ. New York: Bantam Books.

Johnson, D., & Blalock, J., 1987. Adults with learning disabilities: Clinical studies.  New York: Grune & Stratton. 

Nicolson, Roderick I., and Angela J. Fawcett, 2008. Dyslexia, Learning and the Brain. Cambridge, MA: The MIT Press.

Reid, Gavin, and Jane Kirk, 2001. Dyslexia in Adults: Education and Employment. New York: John Wiley & Sons, Ltd.

Reiff, H.B., Gerber, P.J., & Ginsburg, R., 1997. Exceeding expectations: Successful adults with learning disabilities. Austin, TX: Pro-Ed.

Seligman, M.E.P., 1990. Learned optimism. New York: Knopf.

West, Thomas G., 2004. Thinking Like Einstein: Returning to Our Visual Roots with the Emerging Revolution in Computer Information Visualization. Amherst, NY: Prometheus Books.

West, Thomas G., 2005. “The Gifts of Dyslexia: Talents Among Dyslexics and Their Families,” Hong Kong Journal of Paediatrics (New Series), vol. 10, pp. 153-158.

West, Thomas G., 2009. In the Mind’s Eye: Creative Visual Thinkers, Gifted Dyslexics and the Rise of Visual Technologies. Second edition. Amherst, NY: Prometheus Books.

For additional information:
Thomas G. West (Session Co-coordinator): Research Scholar, National Library of Medicine, NIH. Mobile, 202-262-1266. Institutional address: Krasnow Institute for Advanced Study, Advisory Board, 4400 University Drive, MS 2A1, George Mason University, Fairfax, Virginia 22030-4444. Email: thomasgwest@gmail.com. Blog: http://inthemindseyedyslexicrenaissance.blogspot.com.

Henry B. Reiff, Ph.D. (Session Co-coordinator): Graduate and Professional Studies, McDaniel College, Westminster, Maryland 21157. hreiff@mcdaniel.edu.