A 20-year study, released in 2002, found that dyslexics who accept their dyslexia and reframe it as a positive are most likely to succeed.
The reframing process takes place over 5 stages, and is “…a set of decisions related to reinterpreting the learning disability experience from something dysfunctional to something functional.”
These stages of self-acceptance of a learning disability are influenced by the Kübler-Ross five stages of grief. The stages aren’t prescriptive but rather show the path to dyslexia self-acceptance that, according to this study, many dyslexics take.
The study shows that many dyslexics never reach self-acceptance (50% of the participants got to stage 5, 50% did not); others may take one step forward and one step back.
Those who accepted their learning disability had been able to:
- reject inappropriate labels that did not apply to them
- recognize and combat the negative valuations by others
The main takeaway for me is this: the path to self-acceptance requires us to own our dyslexia. Figure it out, call it what you want, make it work for you in a positive way–rather than letting others define who we are, and what we can and can’t do (usually in a very negative way as you’ll see below in the “labeling event” stage).
Stages of acceptance of a learning disability: The impact of labeling by Spekman, Goldberg & Herman, 1992; published in the Learning Disability quarterly, 2002
The study tracked 200 dyslexic students over a 20-year period (they were students at the Frostig Centre in California when the study started, and were in their 30s by the time the study concluded). The study uses the participants own descriptive language, categories, and organization of the concept of “acceptance” of their learning disability (I include some quotes from the study–dyslexics are very good at expressing how they feel about dyslexia!).
The researchers found that half of the participants were “successful” and half were “unsuccessful” based on employment, education, family, emotional and social criteria.
The most successful had gone through all 5 stages of self acceptance, and had done so rapidly.
The overall purpose of the study was to understand and describe the common “life-span experiences” of the students so that “generalizations, implications, and recommendations could be made for all persons with learning disability.”
The five stages
Stage 1. Awareness of difference
All participants described a time when, although the problem had not yet been pinpointed, they were aware of being different from other children (both academically and socially).
“My parents knew something was wrong but they just, you know, the teachers would tell them that I wasn’t trying and was a bad student and didn’t have enough supervision and discipline at home.”
Stage 2. The labeling event
When the difference is diagnosed as dyslexia — often proceeded by many other (and sometimes incorrect) labels: “nearsighted,” “hard of hearing,” “visual perceptual problems,” “auditory sequencing deficit,” “speech/language delayed,” ”emotionally disturbed,” “schizophrenic,” “obsessive/compulsive disorder,” “underachiever,” “remedial reader,” “slow,” “mentally retarded,” “dyslexic,” “attention-deficit disordered,” “behavior problems,” “troublemaker,” “lazy” or “conduct disorder.”
“We went to all kinds of people. People thought it was my eyes, to all kind of people who came along. I think a lot of times people are looking for … and certainly I think my parents wanted to look for an easy fix, too.”
Stage 3. Understanding and negotiating the label
Following the labeling event participants (and their parents) struggled with two issues:
- To understand exactly what having an LD means (what the child can and can’t do)
- To resolve confusion as to what kind of help would be needed, especially as it related to school environment and special education placement
“I didn’t understand. I thought I was retarded. I thought that someone with a learning disability, because it wasn’t explained to me, was second to somebody with Down’s Syndrome. That I was doomed to riding the short bus all my life, so to speak. I did not understand and it was very, very difficult.”
Stage 4. Compartmentalization
When you start to “minimize the importance of dyslexia” and reject other labels that aren’t accurate. “The task of this stage is to minimize weaknesses and maximize strengths, both inside and outside the classroom, and “contain” the disability to classroom situations.”
“Actually I don’t like the term learning disability. I don’t like the term dyslexia because it has come to be known as a catch-all…When you say learning problem, that doesn’t mean I have a problem learning. The problem isn’t learning. The problem is reading and writing. I’m articulate. I like school, I just don’t like schoolwork. I mean I love learning; I love reading and being in classes. I just hate writing and trying to organize myself and writing papers and stuff.”
Stage 5. Transformation
The final stage of acceptance in which you see dyslexia as a positive force your life.
“Why don’t you use the positive thing of being a dyslexic? Here’s somebody who is going to carve a different path. Here is somebody who is going to learn in a different way. Society needs that. Acknowledge that and use that. That’s a plus.”
“Proud of? Maybe just the ability to keep going. I have learned to keep going no matter what people said. No matter if it was inspired by anger or revenge or whatever, still it’s ability to keep plod-ding along. It gives you mental toughness.”
“I don’t know what it’s like not to have dyslexia.I don’t know that I want to do life over again with-out it. It’s part of me. It will hinder me as it has and it will push me into places where I would never have gone before, like it did in college.”
Getting to self-acceptance isn’t always easy. The participants report having to negotiate stigma while being expected to achieve the same results as their non-dyslexic peer group with little/no support. So that’s something like this: “There’s something wrong with you, but we expect you to be like everyone else.” I’ll share more about that conundrum in an upcoming post.
And full disclosure: I’m not at stage 5 yet. Stuck at 3 and 4. I think my daughter is moving through these stages at a much faster pace–proof that diagnosis and support at an early age makes a huge difference to learning and to self-esteem.
A bit of homework: If you’re dyslexic think about what stage you’re in, and how you got there. If you’re a parent or an educator, is there anything here that could help the dyslexic children in your life reframe and accept their dyslexia?
“Your peers call you stupid and retarded. They make fun of you. You don’t feel good about who you are. Your self-esteem goes down. You think of yourself as a stupid child. Because that’s what everybody’s projecting onto you. So there are more disadvantages to having the learning disability than there are advantages.”
“That stress thing there is like you know when you’re a kid, yeah it’s a thousand percent stressful. Because you are striving to learn something you didn’t know before. And as an adolescent, yeah, yes. I had the training to teach me how to do it and everything but it was still a major portion of my life. I was still trying to achieve in school. So it was still a major stress. But not as major as when I was a little kid. Difference in attitude. And when I became an adult I just looked at myself totally differently. It was not any problem at all.”
Photo credit: Photo by Anthony on Pexels.com
Stages of acceptance of a learning disability: The impact of labeling by Spekman, Goldberg & Herman, 1992, Learning Disability quarterly, 2002.
How to find your own identity and capitalize on it (Forbes, 2012)