by Ivy A. Bartholomew
Millions of adults and children cope with this common yet misunderstood condition.
IMAGINE what life would be like if every time you picked up a newspaper, all of the words and letters appeared jumbled. Sentences easily understood by others seem as if they were written in a foreign language. If a friend reads the day's news aloud, you understand it perfectly. But when you look at the same page, it's completely incomprehensible.
That's the reality faced by millions of adults, teens and children coping with dyslexia, a learning disability that prevents otherwise capable people from learning to read, making everyday tasks painful to perform and, in the process, eroding self esteem. However, with proper diagnosis and treatment, people with dyslexia can learn to read effectively and participate fully in mainstream society.
AS A GIRL, JOAN ESPOSITO KNEW she was different than the other children in her class. Although she knew she wasn't "stupid," her efforts to grasp basic grammar, spelling and math rules were fruitless. Reading and multiplication were virtually impossible. "In school I felt I was slow, retarded," remembers Joan, a Paul Harris Fellow and the wife of Rotarian Leslie Esposito, a past president of the Rotary Club of Montecito, California, U.S.A. "Sitting next to someone who could spell - when you couldn't - you knew there was something wrong with you."
Born in England during World War II, Joan's poor performance was attributed to a "traumatic birth" and stressful early years. Her brother Jerry had similar difficulties in class, but school officials failed to recognize that the two siblings might have a learning disability. When Joan graduated from high school, in lieu of grades she received a list of her positive traits, such as a notation that she was "a neat and tidy girl from a good family."
Without the education needed to work in an office, Joan found work as a manual laborer scrubbing floors and cleaning hotel rooms. Joan later moved to the United States, where she relied on her vivacious personality to cover her lack of scholastic skills. She became an expert at memorizing the necessities she needed to know to play the role of hostess, cook and interior decorator for her then-husband, a literary agent, in Beverly Hills, California.
When her 11-year marriage ended in divorce, Joan and her son, Joel Brand, were on their own. "Friends would offer me jobs, but I couldn't take them because I couldn't read, I couldn't type," Joan remembers.
By the age of 40, Joan remained functionally illiterate. "I owned 17 dictionaries which I had bought throughout my life hoping that I could find one that would work for me," she says. None did.
It wasn't until 1987 when Joel, then 17, was diagnosed with dyslexia that Joan's own dyslexia was discovered - at age 44.
THE AMERICAN PSYCHIATRIC ASSOCIATION defines dyslexia as a reading disorder that is "characterized by distortions, substitutions or omissions," with "slowness and errors in comprehension" during both oral and silent reading. In other words, individuals with dyslexia have difficulties interpreting written language. Contrary to the stereotype, a person with dyslexia doesn't necessarily see letters, words or numbers as if they were printed backward, although it can be a symptom.
"Learning-disabled individuals have problems processing information," says Larry B. Silver, M.D., a clinical professor of psychiatry at Georgetown Medical Center in Washington, D.C., U.S.A., and president of the Learning Disability Association of America. "The brains of dyslexics are wired differently. The parts of the brain that fire and operate when dyslexics read are very different than they are in someone without a learning disability."
This "faulty wiring," which researchers estimate exists in 10 to 20 percent of the world's population, prevents a person with dyslexia from learning to sound out words and ultimately, from learning to read. Dr. Silver explains there are 44 phonemes, or units of sound, in the English language. Each consonant has a sound, and vowels have two - a short and a long sound. A person with dyslexia, however, can't distinguish between the different sounds within each word.
Sally E. Shaywitz, M.D., a researcher at Yale University in New Haven, Connecticut, U.S.A., and co-director of the Yale Center for the Study of Learning and Attention, uses the word "bat" as an example. Bat consists of three phonemes: "bah," "aah" and "tuh" - a concept non-dyslexics readily understand. However, people with dyslexia recognize only the single sound of the entire word, "bat," she explains.
Dr. Shaywitz and her husband, Bennett Shaywitz, also co-director at the Yale center, validated this theory by using magnetic resonance imaging technology to observe the brains of study subjects as they read. Writing in the March 1998 issue of the Proceedings of the National Academy of Sciences, they concluded that individuals with dyslexia have different brain activation patterns, which "provide evidence of an imperfectly functioning system for segmenting words" into their sound units.
Their research, Dr. Shaywitz explains, "makes a hidden disability like dyslexia become visible and come alive. Now that we are able to conduct imaging studies of the brain, we can see parts of the brain where there is a glitch in the neurocircuitry."
Despite their reading limitations, people with dyslexia often possess special talents in areas that require visual, spatial and motor integration. They often excel in art, athletics, architecture, graphics, electronics, mechanics, drama, music and engineering. The list of "famous dyslexics" includes scientist Albert Einstein, artist Leonardo da Vinci, singer John Lennon, author Hans Christian Andersen, broker Charles Schwab, entertainer Cher, Internet pioneer Nicholas Negroponte and retired U.S. baseball player Nolan Ryan.
Researchers also report that more than half of all cases of dyslexia are inherited. Despite this fact, Dr. Silver points out that the symptoms of dyslexia are most commonly first noticed by teachers, who often misinterpret them as signs of laziness or lack of ambition. He adds there are no accurate estimates of the number of adults coping with undiagnosed dyslexia. "There are so many people who are missed," he says. "Part of the problem is how to define a learning disability. Some people define it as two standard deviations between your ability and your performance. How do you define it?"
ALTHOUGH INFORMATION DESCRIBING dyslexia was published more than 100 years ago in the British Medical Journal, human intelligence was then, and still is today, often equated with reading ability. "Most people assume that if someone is smart, motivated and schooled, he or she will learn to read," Shaywitz wrote in 1996. However, a recent poll conducted by Roper Starch Worldwide, a public opinion polling consultancy, found that 56 percent of U.S. respondents thought learning disabilities are caused by a child's environment, while 48 percent attribute such problems to laziness. Unfortunately, these two misconceptions can fuel feelings of shame or guilt among people with dyslexia, while perpetuating myths to the general public.
Overcoming dyslexia - a process experts term "remediation" - relies on an accurate assessment of a person's skills and weaknesses. Remediation focuses on improving the weaknesses while bolstering the strengths to compensate for the shortcomings. For example, if a person has difficulty reading, but can remember muscle movements and configurations, he or she might learn to sound out words by learning how each phoneme "feels." For example, the letter "p" is remembered as a "lip-popper," because that is how the mouth moves when that letter is pronounced.
According to the Educational Resources Information Center (ERIC), which is affiliated with several U.S. agencies and the U.S. Department of Education, there are three categories of remediation assistance: psychosocial, technological and educational. Psychosocial assistance strengthens self-esteem by teaching people about their disability, identifying their personal strengths and weaknesses, developing compensatory strategies, and explaining their legal rights.
Assistance technology, including digital watches, tape recorders, videotapes with closed captioning, books-on-tape and electronic spelling and grammar checkers, can help people with dyslexia minimize the disability's impact on their daily lives. Another helpful tool is the so-called "reading pen," a hand-held device that defines and sounds out unfamiliar words.
Educational strategies include allowing students with dyslexia more time to complete assignments and exams, permitting technological aids in the classroom and planning curricula that utilize a variety of teaching approaches. Multisensory teaching, for example, uses visual and auditory cues, rather than printed text, to drive lessons home. For example, Joan Esposito uses a color-coded technique that is based on the Orton-Gillingham-Stillman Approach, developed in 1935 and often described as the grandfather of multisensory programs. "I have always had problems with vowel sounds," explains Joan. "If I write the word, 'wait,' 40 times, I'll still forget it. But when I color code the 'w' and 't' yellow, and one vowel blue and the other green, and use large motor movements to write the word, I can visualize the colors - yellow, blue, green - and spell it correctly."
Although dyslexia doesn't have a "cure," once a person confronts the disability and accepts its challenges, the stigma felt before diagnosis often disappears. After remediation therapy, Joan went on to found the Dyslexia Awareness & Resource Center (DARC) in Santa Barbara, California, a non-profit organization that houses one of the region's largest collections of books and tapes about dyslexia. Instead of hiding from the world like she once did, Joan now focuses her energy on teaching children and adults about their disabilities. Embracing life with new vigor, she is trying to make up for lost time by working as an education activist. She also has learned to rely on her sense of humor to help cope with everyday challenges. "I reverse numbers all the time," she admits. "Just the other week, I reversed my own address. But now I laugh at it. I would never have laughed before I was diagnosed."
As word of Joan's inspiring story spread to Rotary circles, she soon became a popular speaker at Rotary clubs throughout the area. She says there have been several Rotarians who, upon hearing her talk, suddenly realized why they had experienced difficulties in school or on the job.
However, Dr. Silver notes that although many people may exhibit one or two signs of dyslexia, most aren't considered learning disabled unless they have numerous symptoms. "If you've always felt that you've never performed as well as you thought you could, often run into problems at work and have to change jobs, and have difficulty with reading comprehension, you should explore the possibility that you have a learning disability," he advises.
LIKE JOAN, ROTARLAN BILL MARGACH didn't realize he had dyslexia until his son, Chip, was diagnosed at age 13. "It hit me like a bolt of lightning," says Bill, a member of the Rotary Club of Fairport, New York, U.S.A. "For me, reading is very painful. In the Rotary environment, Rotarians don't perceive I have reading limitations because I have good coping skills. I have learned to effectively work around the problem."
One way Bill deals with his inability to pronounce and remember names is to write down the names immediately after hearing them. "I use a phonetic code of my own to spell the person's name so I can remember it in the future," he says. "It is very difficult for me to pronounce names without first converting them to my special code. I feel embarrassed about my different way of learning words compared with other people. I have difficulty with simple things, like reading unfamiliar material aloud. I stumble over words, even easy ones."
Despite his own challenges, Bill says he is more concerned about the future of his 15-year-old son. "From a parent's perspective, you become anxious when your child is having learning difficulties in school that teachers attribute to disinterest and laziness. The challenge is discovering what is causing these difficulties and finding new learning methods that help overcome them."
But where should parents turn for help? Over the years, mental health professionals have been accused of both under- and over-diagnosing dyslexia, and the resulting confusion has opened the door to some unethical practitioners pitching quick-fix schemes. To help parents avoid such pitfalls, Dr. Silver offers guidelines in his most recent book, "The Misunderstood Child" (Random House, 1998). For example, he warns parents to be wary of individuals who promote particular treatments, but cannot provide supporting documentation from respected journals. Likewise, be suspicious of someone who berates "traditional medicine" as too conservative and close-minded.
"One is left to wonder why, if what is claimed is accurate, the treatment is not used by most professionals in the field," Dr. Silver notes.
Despite more than a century of research, dyslexia remains a mystery to most people. Says Joan, "Because I was without an accurate diagnosis until I was an adult (and a parent), the labels I gave to myself as an uninformed and innocent child were stigmatizing. Learning that I had dyslexia freed me to fulfill my dreams and go on to become a successful adult and a contributing member of society."
Ivy A. Bartholomew is an assistant editor of THE ROTARIAN.
The Dyslexia Awareness & Resource Center (DARC), founded by Rotarian Leslie "Les" Esposito and his wife, Joan, has helped affected families cope since 1991. Serving approximately 1,800 people a year, the center focuses on raising the awareness of parents, students, adult dyslexics, educators, law enforcement agencies, employers and health professionals about dyslexia, attention deficit disorder and other learning disabilities.
Rotarians from Les' club, the Rotary Club of Montecito, California, U.S.A., embrace the center's mission and regularly volunteer at the non-profit facility. The club also hosts the annual Million Dollar Hole in One fundraiser, with the proceeds benefiting DARC.
In 1998, District 5240 (California) expanded the center's reach by partnering with District 3720 (Korea) to fund literacy libraries for learning disabled children and adults in southern California. The Rotarians provided more than $24,000 through a Humanitarian International Matching Grant from The Rotary Foundation of R.I. to purchase educational books and videotabes about learning disabilities. Literacy libraries were set up in 26 public libraries, a youth correctional camp, two public school libraries and an advocacy program run by the California juvenile court system. Each library contains 14 educational videotapes and 25 books, and all material are available throughout District 5240. "The resource libraries have been primarily set up to meet the needs of low-income children and adults affected with dyslexia," says Les, a past president of the Montecito club and a Paul Harris Fellow. "To be successful in school, you need to learn how to read. Children need to learn to read in the first three grades. If there is an indication that a child has a learning disability, we can offer help right then and there."
Rotarians also utilize the center's resources. "When my son was small, I knew he was dyslexic because he was writing sentences backward and having trouble in school," remembers Michele Hinnrichs, a dyslexic herself and a past president of the Rotery Club of Santa Ynez Valley, California. "I feel very fortunate that my fifth-grade teacher recognized that I wasn't stupid and had me tested for dyslexia. Her act made me more aware of the importance of testing, so I took my son to the center."
Helping families like the Hinnrichses is what the center is all about, say Les and Joan. "We go home every day feeling like we are serving humanity," Les says. "We get joy from teaching a person to function more effectively in this world. That's one of the reasons we are so close to Rotary over the years. We try to fulfill the Rotary motto, 'Service Above Self' through the center."
Regional resources like Joan's center and other non-profit organizations exist to help adults with dyslexia and parents of children with dyslexia locate legitimate services that fit their needs. You can check out the following resources for basic facts, inspiration, parenting advice and information on schools for students with learning disabilities.
Reading Programs | Conference | Feature Articles | AD/HD | Resources | Links