The Yale Center for Dyslexia and Creativity
Dyslexia and the Americans With Disabilities Act Amendment Act:
A Q&A with Dr. Sally Shaywitz
Putting Science before Mythology and Misunderstandings

Dr. Sally Shaywitz and journalist Alix Boyle discussed the need for revising and updating the Americans With Disabilities Act in a November ’08 interview in New Haven, Conn., at Yale’s Center for Dyslexia and Creativity.  This article has been updated to reflect passage of the ADAA which went into effect on January 1, 2009. 

 

Sally ShaywitzDr. Sally Shaywitz, the Audrey G. Ratner Professor of Learning Development at Yale University School of Medicine, spent a great deal of time this spring and fall working with lawmakers on both sides of the aisle and the Justice Department to better understand how the then current ADA law is not serving the large numbers of dyslexics it was intended to serve.  The Americans with Disabilities Act was written over eighteen years ago and Congress felt it was time to reexamine and refine it.  While the ADA was intended to include and support dyslexics, it has not been as effective as was hoped.  As the ADA was being reconsidered, Drs. Sally and Bennett Shaywitz spent countless hours educating and urging Congress to restore the ADA to its original intent of protecting people with disabilities, including dyslexia, from discrimination.  Originally enacted in 1990, the law has been limited by court cases on the state and federal levels.  And now a new law, the Americans with Disabilities Amendments Act, is active, thanks to a team effort by the Shaywitzes and other committed friends of The Yale Center for Dyslexia & Creativity.


 

Q: Tell us why the ADA had to be modified. 

 

United States Supreme Court, Dyslexia and the ADA
"...both the United States Supreme Court and the high-stakes testing agencies (like the College Board and the National Board of Medical Examiners) have chosen to interpret the ADA to severely limit who is covered..."
A: The Americans with Disabilities Act was enacted eighteen years ago and was meant to level the playing field for people with disabilities.  Congress intended a broad range of people, including those who are dyslexic, to be protected by the law.  Unfortunately, in the ensuing years, both the United States Supreme Court and the high-stakes testing agencies (like the College Board and the National Board of Medical Examiners) have chosen to interpret the ADA in a way other than as Congress intended.  In the case of dyslexia, they have interpreted it to severely limit who is covered by the ADA—seeming to totally disregard the spirit and intent of the ADA and scientific evidence pointing to the absolute need for the accommodation of extra time for people who are dyslexic. 


Q: Why should dyslexia be included in the ADA?

A. If you break your arm and your arm is in a cast, there is visible evidence of a disability.  If a person is in a wheelchair it is apparent that she is disabled.  In contrast, dyslexia is a hidden disability; there’s no external sign on you saying you are dyslexic.  New scientific findings have shown that there is a biological difference between dyslexic and typical readers; however, until functional imaging, these differences remained hidden from view.  In addition, dyslexia is a paradox—that is, in dyslexia a person can be very bright, possess a strong intellect with outstanding reasoning and analytic abilities and yet read slowly, at times, speak with mispronunciations and hesitations (not be glib), and spell poorly.  It’s easy to dismiss the fact that such a dyslexic person has a problem; easy, but also wrong.

research and science.  dyslexia evidence in the brain
Critical is to keep the definition in mind: Dyslexia is an unexpected difficulty in reading, a disparity between intelligence and reading ability, particularly reading fluency.
Critical is to keep the definition in mind:  dyslexia is an unexpected difficulty in reading, a disparity between intelligence and reading ability, particularly reading fluency.  We have now learned that, in typical readers, reading achievement and intelligence are linked across development, that an increase in one produces an increase in the other; reading influences intelligence and vice versa. They go hand in hand such that one predicts the other.  Dyslexia is different though, for here reading and intelligence are not linked over time; instead, each goes its separate way.  In the case of dyslexia, intelligence can be quite high while reading is average or less.  Furthermore, as an individual matures, it is not only the comparison between reading and intelligence but between a person’s reading and his or her educational level or professional status that forms the definition of dyslexia.

Modern science has alerted us to the importance of reading fluency.  We used to think reading was about reading words accurately and comprehending what was read.  Now it is understood that if reading accuracy and comprehension are the pillars of the arch of reading, fluency is the keystone.  Reading fluency is the ability to read not only accurately, but rapidly and automatically, really effortlessly.  Educators have learned how to help children and young adults to read more accurately, and even dyslexic children can and do improve their accuracy as they mature.  However, no one has figured out how to overcome the lack of fluency.  As a consequence, for dyslexic children and adults, instead of its being rapid and automatic, reading remains slow and effortful.  Dyslexics have to work harder at reading, it's more tiring, and it takes longer.  At the same time, research has shown, the dyslexic person who is the slow reader can also be the high-level comprehender—providing, and only if, s/he has been allowed extra time to slowly read the words on the page.  The dyslexic reader has the comprehension skills to understand and reason at a very high level but–only if s/he is permitted the additional time necessary for him/her to slowly decode the words.  Essentially, dyslexia robs a person of time; receiving additional time returns it.  The additional time acts as a bridge allowing the dyslexic person to access his higher-level strengths.  Furthermore, contrary to the popular myth that everyone would benefit from extra time, the evidence clearly indicates that it is only the dyslexic person—and not the typical reader—who benefits significantly from additional time.  It is the dyslexic young man or woman who has a neurobiologic need for extra time (see below).

When bright but dyslexic students request accommodation on high-stakes standardized tests like the SAT or GMAT or LSAT or MCAT, the request is rejected.  The student is often told, "your grades are too good, you're not disabled."
"Now, because bright but dyslexic students have earned good grades, when they request accommodations on high-stakes standardized tests, like the SAT or GMAT or LSAT or MCAT, the request is rejected.  The student is often told, “Your grades are too good, you’re not disabled.”
Young people who have gone through school and have been identified as dyslexic have received accommodations over the years, such as extra time on exams and a separate room in which to take tests.  A quiet room is required because their lack of automaticity in reading results in a need for such intense focus during reading that any noise will break their concentration.  So, here we have a situation where dylexic students have the ability to comprehend at high levels, and if such students received reading help and the accommodation of extra time, they will have performed well in school and received good grades.  They have been allowed to access their higher-level thinking abilities.

Now, because bright but dyslexic students have earned good grades, when they request accommodations on high-stakes standardized tests, like the SAT or GMAT or LSAT or MCAT, the request is rejected.  The student is often told, “Your grades are too good, you’re not disabled."  It’s like telling a person who has a motor impairment but is able to cross a street with the aid of a wheelchair or cane, "You couldn’t be disabled, because you got across the street,” forgetting that the reason he got across the street was because he had the accommodation of the wheelchair or cane.

accommodations for dyslexics
It’s like telling a person who has a motor impairment but is able to cross a street with the aid of a wheelchair or cane, “You couldn’t be disabled, because you got across the street,” forgetting that the reason he got across the street was because he had the accommodation of the wheelchair or cane.
In light of all this, the Supreme Court has ruled in recent years on several cases addressing so-called mitigating measures.  In determining whether a person who has benefited from mitigating measures under the ADA (that is, a physical or mental impairment that substantially limits a major life activity) the effects of the person’s mitigating measure must be considered.

As a consequence, if you are benefiting from mitigating measures, you are no longer considered disabled and entitled to ADA protection.  For example, if you are diabetic but your blood glucose is controlled by diet and medication, you are deemed no longer disabled according to recent interpretations of the ADA.  In the same way, if you are a dyslexic who demonstrates an extraordinary work ethic, frequently giving up any semblance of a social life at college, reads effortfully for long hours into the night due a persistent lack of fluency, and who through the ameliorative effect of testing accommodations earns a high grade point average, you are considered not to be disabled.  This issue of mitigating measures was a major issue that had to be corrected.  This is not what Congress intended but, nevertheless,  it is how the Supreme Court ruled in denying ADA coverage to many, including those who were clearly dyslexic and unable to read fluently (rapidly).

Another area of serious concern with the manner the ADA has been interpreted is the issue of the average person.  Testing agencies have interpreted the law to mean that, if you are reading at the level of an average person, then you are not disabled.  While such an approach might work for physical disabilities where the definition of the particular disability and resulting comparison is to the so-called average person, such a comparison is not appropriate for dyslexia.  Why?  It violates the very foundation and basis of dyslexia whose definition resides in a comparison between a person’s reading (accuracy or fluency) and his intelligence, level of education, or professional status.  Thus, dyslexia at its core and in its definition is a disparity within the person, not comparing one person to another.

In diagnosing dyslexia, you are comparing that person’s reading ability to his cognitive ability, educational level, or professional stature.  If you’re a second-year medical student with an IQ of 140 and you are reading at 100, for you that is a huge disparity—one not characterizing your fellow medical students who may have a similar IQ of 140, but who are also reading at about that level.  However, dyslexia is different, for here the person with the high IQ (or who has had the cognitive ability and perseverance to read college, graduate school, or professional school materials) while at the same time having a neurobiological disruption in the neural systems for rapid reading suffers the result of extremely slow and effortful reading.  This means that your cognitive ability is such that you have the ability to master complex and very difficult conceptual material within a college and graduate or professional school curriculum despite having such impaired reading fluency.  The average person with the same reading difficulties would not be able to master the curriculum of medical school.  Dyslexia is conceptualized as an encapsulated weakness resulting in slow reading surrounded by a sea of strengths.  It is the sea of strengths in thinking and reasoning that, together with the accommodation of extra time, allows a slow-reading but good-thinking dyslexic to succeed.  The accommodation of extra time on tests levels the playing the field, allowing the hardworking dyslexic to access his strengths and demonstrate his knowledge.

without accommodations dyslexics are presented with a seemingly impassable hurdle
The failure to grant accommodations to deserving dyslexics has become a seemingly impassable hurdle to those dyslexics who, up to the present, by hard work and accommodations have been able to overcome each barrier they have encountered.
The failure to grant accommodations to deserving dyslexics has become a seemingly impassable hurdle to those dyslexics who, up to the present, by their hard work and accommodations have been able to overcome each barrier they have encountered.  People are being punished because they can only read at an average level.  They are being denied accommodations because they are too smart.  Such interpretations of the ADA by the courts appear to be placing a ceiling on the achievement level of people who are dyslexic which, of course, is contrary to the congressional intentions of the ADA.

A young man I know attends medical school.  Diagnosed with dyslexia in the early grades, he received good instruction, worked very hard and received accommodations through high school, college, and now medical school.  He also requested and was granted extra time for his SATs.  Now, in the third year of medical school, he is required to take a very high stakes examination, the United States Medical Licensing Exam (USMLE), in order to continue on in medicine.  As for his previous tests, he requested accommodations, but in this instance was denied, seemingly based on his good performance in college (where he had received testing accommodations).  Recognizing that he cannot demonstrate his knowledge and pass the test if he does not have enough time even to read the questions, his family sought the assistance of the court to enforce the application of the ADA.  Here, based on older interpretations of the ADA, the judge said, in effect, "You can read menus, road signs, you can read as well as the average person,” ruling that the student was therefore not disabled and denied him accommodations.  This ruling totally disregarded the medical student’s neurobiologically based inability to read rapidly and his consequent requirement for extra time if he was to demonstrate his knowledge.  Ironically, his medical school has allowed him additional time on tests in each of his courses and, with the provision of such time, the student ranks in the top quarter of his class.  Without such extra time, he would no doubt fail his courses and will most likely fail the USMLE.  Here, sadly, not only would the student have to leave medical school but society would be deprived of what it currently needs most:  a compassionate, caring, and knowledgeable physician who knows what it is like to struggle and to experience hardship.  Such unfortunate situations involving bright, dyslexic students who want to go forward in their education but are being turned down and stopped in their tracks are now happening all over the country.

Q. Who were the people in Washington who helped get the law passed?

A. Sam Gejdenson, a former ten-term Connecticut congressman who is also dyslexic, introduced our YCDC group to key congressmen and women, for example, Rep. George Miller (D-CA), who is chairman of the House Education and Labor Committee, and Rep. Rob Andrews (D-NJ), and Rep. Joe Courtney (D-CT).  Sen. Chris Dodd (D-CT) and his staff were also extremely helpful.  Having laws changed is difficult.  The mitigating-measures clause has now been removed from the law, but the harmful component concerning the average person remains.  This means that bright dyslexic young men and women are going to continue to be unfairly penalized and that is not what the law intended.  Even though the law was not optimal, it was an improvement, a step in the right direction.

Sam also put us in touch with Rep. Pete Stark (D-CA), who delivered a colloquy with Rep. Miller on the floor of the House of Representatives which strongly and passionately spoke to this very significant issue of the average person.  In his remarks, Rep. Courtney also strongly and explicitly supported the needs of the dyslexic person.  These caring and informed congressmen spoke to these important issues, and their remarks are part of the Congressional Record.  Now when judges rule, they will look to the law but also to this colloquy that reflects the intent of Congress.

 

YCDC with members of Congress
from Left to Right: YCDC Council Member Claude Wasserstein, Rep. George Miller, Sally Shaywitz, Joe Courtney, Bennett Shaywitz, Sam Gejdenson

 

 

Q. What is the next step?

A. Clearly, we are only partway there.  What is critically needed now to protect the rights and futures of bright dyslexic individuals is to obtain passage of a law recognizing the validity of dyslexia as a diagnostic category—recognizing that it represents a disparity between intelligence, education, or professional status and reading fluency and recognizing what needs to be done in terms of reading instruction and accommodations to offset that disparity.  A law is critically needed that reflects the science of dyslexia rather than outmoded myths and prejudices.  There is now science, and through the powerful tool of functional brain imaging (fMRI) scans of living, healthy children and adults' brains as they read, we can easily observe that there is a neurobiological difference between dyslexic and non-impaired readers:  not in intelligence, but in the systems that allow you to read rapidly.  The neural system allowing rapid, fluent reading in typical readers is disrupted in dyslexic readers.  As a result the dyslexic reader cannot call upon the neural circuitry for rapid reading and must read slowly.  Yes, there are compensatory systems, but these only help in accuracy; they do not support fluent reading.  Instead of the rapid route to automatic reading, the dyslexic must try to take a secondary route, one that is seemingly longer and more circuitous.  This secondary or manual route to reading will get the dyslexic reader to his or her destination, but s/he will have to work a lot harder and take a lot longer to get there.  It’s inexcusable not to have science take hold and influence what happens to dyslexic people.  Congress is interested in doing the right thing and leveling the playing field for dyslexic individuals.  Our hope is to have such essential and needed legislation and, at the same time, to also demystify dyslexia and to take away all the misconceptions of dyslexia, such as that dyslexics write backward.  It may be that some people with dyslexia do this, but it is not the cornerstone of what dyslexia represents.  Right now, to ensure that students such as the medical student whom I mentioned earlier are not unjustly prevented from realizing their dreams for which they have worked hard and for which they have the ability, it is necessary to have legislation recognizing the special case of the definition and the neurobiological need for extra time for students and others who are dyslexic.

 

Q. What role did The Yale Center for Dyslexia & Creativity play in changing the law?

A. The very fact that our group, representing The Yale Center for Dyslexia & Creativity (YCDC) and the millions who are bright and dyslexic, was able to go to Washington to meet with congressional representatives and bring attention to the needs of those who are dyslexic was critically important.  I also met with the Disability Coalition and raised their awareness of dyslexia.  Prior, there was the concern that dyslexia might not even be on the group’s radar screen.  YCDC was able to meet with a representative of the business community and the U.S. Chamber of Commerce and show him PowerPoint slides about the nature of dyslexia, including images taken from our fMRI studies demonstrating the differences of the neural circuitry for reading between dyslexic and typical readers and pointing out in dyslexic readers the disruption in the word-form area, critical for rapid, fluent reading.  He listened intently and came away, I think, with a new, scientifically informed view of dyslexia and with it, the absolute need for the accommodation of extra time on tests.

The Yale Center for Dyslexia and Creativity logoThere were high moments and other instances that showed how much more work there needs to be done.  The hope is to continue a scientifically informed dialogue.  The Yale Center for Dyslexia & Creativity is at the forefront of the latest scientific information and a dynamic resource for people affected by dyslexia.  YCDC will be asking, “What is the next feasible step?"  “What needs to be done?"  There are so many people who have been touched by dyslexia, yet don’t know what it is.  The new knowledge of dyslexia and its strengths and need for accommodation to access these strengths is akin to turning the light on.  We meet people all the time—doctors, medical students, educators, scientists—who realize reading is really hard for them, but never knew they had dyslexia.  We at YCDC are gratified to be able to synthesize the scientific basis of dyslexia, to explain it, to put it together in a way that it all fits together and leads to better lives and to more fulfilling futures for young men and women who are dyslexic.