Dyslexia affects one out of every five people on the planet, but there's still very few state or federal policies that address the disability.
A recent panel at Yale University brought together people with dyslexia, researchers, and lawmakers who discussed the difficulties and advantages of living with dyslexia, in hopes that policy will finally begin to follow the science.
The panelists included an Academy-award winning movie producer, a Hollywood agent, an economist, a lawyer, and a heart surgeon. Each has dyslexia, and each has become wildly successful.
Dr. Sally Shaywitz, co-director of the Yale Center for Dyslexia and Creativity, which hosted the event, provided the packed house with information on the disability, and she also dispelled a few myths.
"I will... ask people, what is dyslexia?" Shaywitz said. "And the answer is so similar: those are the people who see letters and words backwards. No! That is not the answer."
Dyslexia is essentially the inability to connect words on a page to sounds. Dyslexics usually have average to above-average intelligence, and are often creative, big picture thinkers that excel at solving problems.
But the event wasn't just about the science of dyslexia, which is often described as an atypical disability that's a mixed blessing. The panelists shared deeply personal stories about growing up and not knowing what was wrong.
Hollywood agent Ari Emanuel described feeling stupid because he couldn't read.
Producer Brian Grazer talked about trying to reconcile getting Fs on his report card while his grandmother told him he was going to do big things.
"Dyslexia can break you down," Grazer said. "And you can't allow it to break you down. When you do have one person that can give you the confidence to not let it break you down, you will maximize yourself more than you could ever imagine."
For dyslexic children who never receive appropriate services, the consequences can be dire. The National Center for Education Statistics estimates that half of the U.S. prison population is functionally illiterate, and according to Shaywitz, the likely cause is dyslexia.
For inmates who are released from prison, recidivism rates vary widely between those who get help reading and those who do not. Inmates have a 16 percent chance of returning to prison if they receive literacy help, as opposed to 70 percent who receive no help.
Illiteracy is also directly related to anti-social behavior. Ten to 15 percent of children with serious reading problems will drop out of high school, and about half of youth with criminal records or with a history of substance abuse have reading problems, according to the U.S. Department of Justice.
Until this year, dyslexia was not a defined disability. Connecticut lawmakers approved a bill that defined dyslexia as a specific disability under which a student can receive special education services. Governor Dannel Malloy has dyslexia, and has been a vocal supporter of legislation that addresses this issue.
However, there's still no federal definition. Last week, the Senate passed a bill sponsored by senators Bill Cassidy (R-Louisiana) and Barbara Mikulski (D-Maryland) that defined dyslexia:
An unexpected difficulty in reading for an individual who has the intelligence to be a much better reader; and... due to a difficulty in getting to the individual sounds of spoken language, which affects the ability of an individual to speak, read, spell, and often, learn a language.
The bill awaits a House vote.
The Bipartisan Congressional Dyslexia Caucus has been working to push similar laws forward, though many of these proposals have not made it out of committee. Shaywitz said the problem is not that more research on dyslexia needs to happen, but that the research already established hasn't been incorporated into policy.
The panelists at Yale discussed how they developed workarounds in their life to avoid extensive reading. Dr. Toby Cosgrove, a heart surgeon, discussed how consistently failing in academia helped him develop a sense of appreciation for hard work.
"I failed so many times in my academic career that I was no longer afraid of failure," Cosgrove said. "Even if you do [fail], you don't worry about it. It's just an experience and you go on."