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 poetto 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.