John Gibbons, Bob Hannigan, Cheryl Harris, Lorraine Russell, Ron White, and Elaine Williams (in collaboration with Janna Oddleifson).
We would like to explain how we have finally been able to overcome illiteracy. After spending most of our lives convinced we could never learn to read and write, we have recently made enormous progress. The success we have experienced in the last few years is the result of being diagnosed as dyslexic and receiving effective help.
We hope the truth about what we have lived and experienced can provide new insights for professionals who find dyslexia a confusing and controversial topic. We especially hope that what we have to say might make it easier for other illiterate adults with dyslexia to receive the information and help they need.
Although w are different from each other in many respects, we agree on what undiagnosed dyslexia has meant in our lives. As children it meant feeling like normal kids until we went to school. It meant being able to do many things, but not being able to learn to read and write. It meant not understanding why written words were so confusing. And why we could not recognize and remember them. Most of all it meant feeling stupid because we could not learn like the other children.
Right from the beginning we were labeled with inaccurate and destructive labels. We were described as "unmotivated", "immature", "slow", and even "retarded". We interpreted these to mean we were dumb, lazy and/or bad. If we expressed our hurt and anger through our behavior (and we often did!). Our learning difficulties were then attributed to "emotional problems," or "problems in the home". In special classes we learned very little and felt cut off from the normal routine of the school. By the end of eighth or ninth grade our sense of failure, frustration, and alienation had grown to the point where all but one of us dropped out of school. Only Elaine was determined to earn a high school diploma; she graduated, but like the rest of us, was still barely able to read and write.
In our adult years, dyslexia has meant facing adult responsibilities as an illiterate person. It has meant struggling with joblessness, underemployment, and sometimes, poverty. It has meant feeling like imposters and living with the terrible fear that people would "find us out." For some of us, it has meant trying to escape through alcohol and drug use.
In spite of these things, we also accomplished a great deal. We have and are successfully raising families; we developed useful skills, and held responsible jobs. There was much to be proud of. Perhaps it was our successes, the sense of being capable that finally convinced us to stop being victimized by illiteracy and try it again.
Several of us sought help in various adult basic education programs which had differing attitudes and beliefs. In any case, we worked hard with the help of compassionate tutors and instructors. Unfortunately this was not always enough. While some of us made notice progress, others made little or no gains. Something still was missing; the pieces were not falling into place as they should. Eventually we all came in contact with people who urged us to undergo diagnostic testing. Only then did we realize that there was a reason why we were having so much trouble learning to read and write: we discovered we were dyslexic.
Being diagnosed as dyslexic was enormously important to all of us. It freed us psychologically and emotionally from the shame and guilt we had felt for years. It was a tremendous relief because it officially recognized and named a difficulty that had caused us much suffering, but which we had not understood. For the first time in our lives, we could believe it wasn't our fault. John's words accurately express all of our feelings "The best thing that ever happened to me was being diagnosed as dyslexic! It was a real breakthrough, a revelation! The monkey I'd carried on my back for years and years was finally put in its place, and I felt I could now do something about it!"
We want to make it very clear that being called dyslexic has helped us, not hurt us. In no way do we think it saddled us with blame or a negative label. In fact, it is only since we have been diagnosed as dyslexic that we have been able to shed the accumulation of negative labels that so seriously eroded our confidence and self-esteem.
As Elaine has said, "I never understood why I could many things, but I couldn't learn to read. Half of me accepted the labels of "dumb" and "stupid." but the other half knew I was an intelligent human being. My parents were told that there was no reason why I couldn't learn. They were made to feel it was their fault. In my heart, I knew it wasn't a psychological problem, but there had to be a reason. Once I was diagnosed, it made sense for the first time."
To Bob, "dyslexic" meant he was not a bad person. "Teachers never could see through my behavior and see why I could be such a bad little kid. One teacher told me that I would be a menace to society and never amount to anything. I didn't really know what a "menace to society" was, but I knew it wasn't anything good. Now I know that even though I did some bad things, I never was a bad person."
The word "dyslexic" can be helpful in other way too. Ron says, "If I get into a situation where I don't think I can do the reading or writing involved, I am comfortable telling people I am dyslexic, when I would never say to them that I can't read well enough. I can then explain that I might need some help, or more time to do it in, or even that I can't do it at all."
It is hard to put in words what it meant to fully realize that we were not abnormal or unintelligent -- that, in fact, we have unique intellectual strengths. To learn that dyslexia is something we were born with, and not something we were responsible for, lifted a huge burden of guilt. For the first time we were given honest explanations of our auditory and sequential processing and memory weaknesses. We began to understand why we hadn’t been able to learn in the way that works for most people.
The idea that not everybody learns in the same way was new for most of us. To be assured that we could learn if we were taught in a way that fit our learning style gave us tremendous hope.
Private tutoring with a teacher who had worked successfully with many dyslexic adults was made possible for several of us through the Massachusetts Rehabilitation Commission. One of us received tutoring at the Massachusetts General Hospital's Language Disorders Clinic. Even with all the assurances we had been given, we approached those first tutoring session with a great deal of fear. "I was petrified that I wouldn't really be able to remember any better than I had before," Bob recalls. The possibility of failure again was terrifying to all of us. Fortunately, we were working with real "pros" that were not only compassionate and encouraging, but seemed to know exactly how we felt.
The thing we desperately wanted to learn was to be able to figure out words. They seemed unknowledgeable like "meaningless rows of little black letter." I felt we were like "unfriendly strangers" whose faces and name names we could never recognize. In spite of all the fears, our years of failure, and all the things we did not know, we began making progress right from the start. Bit by bit, little by little, skill upon skill we went forward. Gradually words lost their mysteriousness. We finally were given the tools we needed to figure them out.
The tutors we worked with were trained in Orton/Gillingham method of instruction. Before incorporating these procedures into our instruction they explained how these techniques could help us. They made sure we understood the rationale behind the learning process we would be using.
We began with the basics and learned all the letter sounds we had never learned. In order to develop we used "multi-sensory" procedures. We had to learn to say, and write the sound letter combinations and had to do this many times. We needed lots of encouragement too. They told us we would never forget things once we had learned them in this way. We found this to be true; we had lost the fear of forgetting.
When people asked us if we minded learning to read as adults, we answer with a resounding "No!". before we understood what we are doing or why. Lorraine says, "I really needed to go back and learn the sounds. Using key words and gestures, I'm learning the short 'e' sound. It is so exciting to learn phonics, like the 'unk' sound, for example and finding out and be able to read words with those letters is really thrilling!"
For Cheryl it's like being given a key to the castle "There used to be certain letters I hated because I could remember what they sounded like. Now that is cleared up because my tutor makes sure of what sounds go with which letters. I also have learned how to break a word down. Before, I had no idea what were the rules in the language that you could apply. For me, this has been a serious relief." "Learning about the language is exciting to me," Elaine agrees. "Who would have ever thought there were four ways you can spell the /sh/ sound? English is crazy, but it's is also fascinating!"
Bob appreciates being able to see the patterns. "I can now look across a line of print and see the patterns that are there. Then I can break the words down into syllables and know how to pronounce each syllable. But I had to be taught about these patterns. I had to work with them many times before I really learned them."
The Orton/Gillingham methods are sequential and structured, but they are also very individualized. Our lessons were tailored to our individual needs. Having the structure helped because it let us see the progress we are making and where we had to get next. "It keeps you on your toes and it keeps you moving."
"I could see myself making progress in each lesson," John remembers. "This was exhilarating, to really see that I was moving ahead. That in itself was so encouraging! I was in my forties, had managed two restaurants with eighty-five employees, and had been stuck at a third grade reading for years." After two and one half years of tutoring, John's reading ability went to an eighth grade level.
We all had made excellent progress for the first time in our lives. We no longer feel trapped in the dark tunnel of illiteracy. We owe this to our compassionate and dedicated tutors, and we owe it to the fact that we have finally been taught in a way that we can learn.
We are fortunate people in many ways. We are working towards high school diplomas, and attending classes in community college. We have had job promotions, and new opportunities in our lives and work. Even so, it is hard not to wonder what might have been -- what we might have been able to accomplish if we had had this type of instruction as children. And we cannot forget that there are many other people who have not yet discovered that there is a way that they can learn and overcome illiteracy.
No one should have to wait as long as we did to get proper help. We know from experience how it feels to be unable to learn through conventional reading methods. People like ourselves need honest and forthright explanations about why they have had so much difficulty. They should not be kept in the dark about their learning strengths or their learning weaknesses. They should understand what dyslexia is and what kind of help is available.
We urge adult educators to become familiar with the kinds of reading and writing difficulties associated with dyslexia. Even if a professional diagnosis is not possible, appropriate teaching approaches can be made available. People with auditory processing and sequencing weaknesses need more than whole word "sight" method or partially phonetic methods. They need to have a phonetic, sequential, multi-sensory method that explicitly presents the logical patterns and structures of the English language. They deserve to be taught in the way that they can learn. We believe our lives are living testimony to the importance of what we are saying. After all, who better than we really knows what dyslexia is all about or understands the way in which we learn?
John Gibbons, Bob Hannigan, Cheryl Harris, Lorraine Russell, Ron White, and Elaine Williams, the six adult learners who contributed to this article, all live in eastern Massachusetts and all share the experience of not discovering, until they were adults, that dyslexia was the cause of their reading problems. Carolyn Buell Kidder tutored all six. They came together as a group a couple of years back to help present a workshop, for Janna Oddleifson at the Wellspring Adult Education Program in Hull, Mass., on dyslexia from the adult student's point of view. Out of this grew the idea of preparing something for this journal. With Janna’s help they began to work on an article, which, after various group discussions and individual interviews, after several drafts and much editing, eventually emerged as the piece included here.
Reference: This article was originally publish in "Connections: A Journal of Adult Literacy, Volume IV, pp. 31 - 33. Adult Literacy Research Institute, 1991.