What is a disability? That sounds like a simple question. But if you work in special education in the U.S. you probably know that it isn’t all that simple. The definition of “specific learning disability” has changed considerably in the last few years.

The Chronicle of Higher Education had an interesting story last week in its news blog. Congress has been tinkering with the definition of the term “disability.” They eventually decided to leave it unchanged for the purposes of the Americans with Disabilities Act (ADA). Congress looked at broadening the definition. Here’s how the Chronicle explained it:

The bill maintains the existing definition that a disability must “substantially limit” a “major life activity” to be considered for coverage under the law. An earlier bill, opposed by college officials, had defined a disability as any “physical or mental impairment.”

This highlights a couple of ideas. First, disability is a social construct. Often we codify it in law. But even then, the definition varies somewhat from law to law, depending on the purpose of the particular law we’re discussing.

Second, a disability is not a medical condition. It may be the result of a medical condition. But some people with epilepsy have a disability and some people with epilepsy don’t. Substitute whatever medical issue, condition, syndrome or disorder you like for “epilepsy.” The issue remains how it affects you, how it limits your activity. And very similar disabilities can be the result of very different medical conditions.

Society is interested largely in accommodating disabilities. How well we protect the disabled in our society is a measure of the maturity of our civilization and of the value we place on human life.

Reading the Chronicle blog post made me think back to the dyslexia discussion with Hugo Kerr (and others) last month that I had on the Reading Teachers listserv (hosted by the International Reading Association). Hugo wanted to define the term “dyslexia” more clearly and called it “an innate, neurological condition.” He wants dyslexia to be a medical condition. And yet both the International Dyslexia Association and the National Institute of Neurological Disorders and Strokes say that dyslexia is a disability.

If we accept the idea that “dyslexia” is the name of a disability (not of a medical condition, per se), it becomes much easier to understand why so much disagreement exists about the causes and symptom of dyslexia. If we see dyslexia as the name of a disability, it becomes easier to understand why rates of dyslexia vary from place to place. In a society without books and reading there’d be no dyslexia – even if the same neurological problems that lead to dyslexia in the US or Britain were common. (An example of such a society is the Lashi of Myanmar; the 30,000 or so Lashi-speakers have only a 1% literacy rate in their own language.)

Does dyslexia exist? If it is a medical or biological condition, the research is still not completely in on that question. But if it is simply a name for a disability, for a set of problems or symptoms that impede the way an individual copes with an important part of life (reading) in modern society, then dyslexia exists. Its status may be in danger; it could be completely subsumed into the legal/educational concept of “learning disabilities.” But at the moment it exists. And it exists simply because we say it does. What we mean by the word “dyslexia” may change. It may have more than one cause. But it exists in the realm of ideas, and it will continue to exist as long as it is a useful idea…

When I first mentioned last month’s dyslexia discussion that I was involved in on the International Reading Association’s listserv for reading teachers, I said basically that I agreed with Hugo Kerr that dyslexia isn’t a very useful concept at the moment – at least not within the framework of American education.

The usefulness of the concept isn’t what drives Hugo’s passion, though. But before I get into that, let me refresh your memory as to who Hugo is…

Hugo Kerr is a vocal member of the Reading Teachers listserv (hosted by the Internetional Reading Association). Hugo live in Wales and has worked as a veterinarian for almost 40 years. For the last 25 years he has also been involved in adult literacy (he has an MEd degree). And he has a new book available (for free at his website) that, among other things, provides a “teacher-friendly but properly sceptical scrutiny of dyslexia.” Hugo doesn’t believe in dyslexia.

I love the way Hugo describes himself in the About Me section of his website:

I love to debate with like minds of like enthusiasms. It has been my experience that great fruitfulness often results. Sometimes heat is generated, but so is light.

If you search the archives of the reading teacher listserv you will find where we’ve generated some of that heat and light over the past few years.

If you’re keeping score, I’ve conceded that Hugo’s position has made me question the usefulness of dyslexia as a concept in American education and I’ve concluded that his definition of dyslexia is far too narrow to make much sense in the context of the current stage of dyslexia research.

I’m writing this to concede another point to Hugo. He feels that a diagnosis of dyslexia is often a harmful thing. Probably, he’d say it is usually harmful (or perhaps even always harmful). In this recent posting to the reading teachers listserv he calls a diagnosis of dyslexia “pseudo-science” and says of such diagonses: “they do real people real harm.” Hugo’s biggest complaint seems to be that the adults he works who have been “diagnosed” as dyslexic have often accepted the idea that something is wrong with them, and that they can’t learn to ready. He characterizes the result as learned helplessness.

At this point in my professional career I think I agree with Hugo that a diagnosis of dyslexia probably does as much harm as good. Why? Well, first of all, there’s so little agreement as to what dyslexia even is. Picture this conversation in the office of a private psychologist that some parent has employed to find out why their child has reading problems…

Psychologist: Ms. Jones I’m afraid I have bad news about Johnny.
Ms. Jones: Oh no. What is it? Why is his problem?
Psychologist: Johnny has dyslexia.
Ms. Jones: Oh my! What does that mean.
Psychologist: Depends on who you ask…
Ms. Jones: Well, what do we do?
Psychologist: I’m sorry, but that depends on who you ask, too.
Ms. Jones: This is so horrible!
Psychologist: It gets worse…
Ms. Jones: How?
Psychologist: You owe me $1,800 for the dozen tests we did on Johnny.

Does dyslexia exist? Maybe. I think the verdict is still out. But there’s no clear definition for it beyond “trouble reading” (which is simply too vague), no agreed upon method for diagnosing it (professional judgment usually plays a hefty role in the process), and such a broad set of possible symptoms that no one single instructional method adequately addresses the problems of all “dyslexics.” And Hugo’s point is valid: people learn to accept that there’s a reason for the difficulty they have with reading, and that’s counterproductive.

Does that mean all labels are bad? I’d have to disagree with that conclusion. And you can read about my feelings on that issue in Why Labels Matter – Part I and in Why Labels Matter – Part II. While I admit that there is a disconnect sometimes between special education labels and medical opinions, avoiding labels altogether in the educational setting is naive and can result in kids not getting the attention they need.

That is the ten thousand dollar question…

I recently participated in a discussion on the International Reading Association’s listserv for teachers, a discussion in which the exact definition of dyslexia featured prominently. As a backdrop to that discussion, let me show you what I found when I went looking for a definition online.

• Speakability, a UK-based support group for people with aphasia, defines dyslexia simply as “difficulty reading.”
• The Communications Forum, another UK-based support group for people with communications disorders, dresses their definition up with a few details: “Difficulty with written language. Dyslexia affects reading, spelling, writing, memory and concentration. Sometimes called a specific learning difficulty. Dyslexia can be developmental or acquired.”
• Shannon Booth, a neuroscience major at a college in Minnesota, has a definition online that seems simplistic to me, but reflects common perceptions: “A disorder where things are done or read backwards. For example, a “d” and a “b” might be confused.”
• inURarea, a UK-based childcare group, expands the definition slightly to exclude some reading problems based on “sensory defect” and specify that it is a neurological condition: “Difficulty in reading due to a defect of brain function other than sensory defect.”
• The Nebraska Department of Education says dyslexia is “a developmental reading disability, presumably congenital and perhaps hereditary, that may vary in degree from mild to severe.”
• Child Care Aware defines dyslexia as “an impairment in the brain’s processing of information that results in difficulty reading, spelling, writing, and related language skills.”
• One high school science teacher says that dyslexia is an “impairment in the visual cortex that leads to difficulty in learning to read, write, or spell.”

You can probably guess from those seven examples that definitions of dyslexia are spread out along a continuum ranging from the simple two word “reading difficulty” to formulas that are tediously long and complicated. They also range from vague generalities (half the people I know have difficulty reading) to somewhat more specific ideas (like being congenital and hereditary) and the nature and location of the disorder.

The term “dyslexia” was coined by an eye doctor in Stuttgart, Germany, in 1881. While the scientific community has been tinkering with the condition for over 125 years, most of the definitions during the first hundred years are best described as “exclusionary.” That is to say that a doctor or therapist would exclude causes for poor reading (is it poor eyesight?…no; is it low IQ?…no; is it a hearing problem?… no; is it lack of access to education?…no), and when the doctor ran out of other choices, the reading problem was determined to be dyslexia. Theories existed about what caused dyslexia, or how dyslexia worked to cause the problems seen in a patient; but the technology to test those theories, to observe brain function, didn’t exist until recently.

The growth of linguistics led to new ideas about dyslexia in the 1970’s – ideas that revolved about brain function and the processing of the sounds in a language. Phonemic awareness has become one focus of research into dyslexia. If children had some problem identifying the psychological sound units of their language, associating those sounds with symbols (letters) would obviously present problems – and reading would be affected.

The development of neuroimaging in the 1980’s and 90’s has further served to promote research into dyslexia. It is now possible to observe some aspect of brain function in a living person without invasive techniques like surgery. And far more data on brain function can be obtained than was possible in the past.

Below you will find a few of the more popular, formal definitions for dyslexia:

• According to the British Dyslexia Association dyslexia is “a combination of abilities and difficulties that affect the learning process in one or more of reading, spelling, writing. Accompanying weaknesses may be identified in areas of speed of processing, short-term memory, sequencing and organisation, auditory and/or visual perception, spoken language and motor skills. It is particularly related to mastering and using written language, which may include alphabetic, numeric and musical notation.”
• The National Institute of Neurological Disorders and Strokes says that dyslexia is “a brain-based type of learning disability that specifically impairs a person’s ability to read. These individuals typically read at levels significantly lower than expected despite having normal intelligence. Although the disorder varies from person to person, common characteristics among people with dyslexia are difficulty with phonological processing (the manipulation of sounds) and/or rapid visual-verbal responding.
• The International Dyslexia Association says that dyslexia “is a language-based learning disability. Dyslexia refers to a cluster of symptoms, which result in people having difficulties with specific language skills, particularly reading. Students with dyslexia usually experience difficulties with other language skills such as spelling, writing, and pronouncing words. Dyslexia affects individuals throughout their lives; however, its impact can change at different stages in a person’s life. It is referred to as a learning disability because dyslexia can make it very difficult for a student to succeed academically in the typical instructional environment, and in its more severe forms, will qualify a student for special education, special accommodations, or extra support services.”

The definitions have some common threads. The IDA’s definition seems gear toward asserting the legal status of dyslexia as a educational disability. All three definitions are broad and general. And none are particularly clinical in the sense of providing much criteria for testing or for distinguishing people who have some of the symptoms but are not dyslexics from people who are dyslexics.

So now I’ll return to my conversation recently on the International Reading Association’s listserv for reading teachers. Hugo Kerr put forward a proposed definition for dyslexia as part of that discussion. I think the definition comes from his new book, but I haven’t finished it yet. Hugo’s definition is

An innate, neurological condition specifically disabling the acquisition and use of literacy.

You can find it here in a post he wrote to the Reading Teachers list, hosted by the International Reading Association. (You can read posts from the larger discussion here, in the archives of that listserv on the IRA’s site.)

If you contrast Hugo’s definition to the three put forth at the beginning of Part II here, it has some advantages and disadvantages. On the one hand, it is more concise, more portable than any of the three definitions we started this piece with. The phrase “the acquisition and use of literacy” keeps us from having to specify particular problem areas and covers things that might be involved in literacy even though research hasn’t discovered them yet.

Two words make the definition difficult to deal with. The first is innate. I’m not sure it’s clear to us what is and what is not innate in humans yet. I know what the word means. I just don’t know how we measure it. How do we determine whether a particular behavior is innate – especially if it is a behavior that emerges after birth during some developmental stage.

The second problem word for me is specifically. From discussions with Hugo on the listserv, he seems to me to feel that the problems commonly called dyslexia will eventually be attributed to disorders that don’t primarily have to do with literacy. Hugo doubts that we’ll ever identify a neurological disorder that specifically affects literacy. In fact, he has said repeatedly that he doesn’t believe in dyslexia (for example here, in the listserv post from the IRA’s site).

So why write a definition for something you don’t believe in? My conclusion is that Hugo’s definition is so narrow in order to define dyslexia out of existence. The definition is in itself a tool for helping to promote the idea that dyslexia doesn’t really exist.

Does dyslexia exist? I’m not sure. I do know that it is a persistent concept. Over a century of work on the idea hasn’t killed it yet. And I know that brain science is a relatively young field in light of the explosion of technology in the last 25 years.

As someone who provides reading interventions in an elementary school, my primary concern is with what prevents reading. Whether reading failure is the primary cause of some brain problem or is more secondary, the growing importance of literacy in our society probably makes literacy the most important area of impact.

One of the most common complaints about dyslexia research is that the definition is so poor. How do we know what we’re testing for in an experiment? Hugo is among those who complain about that problem. Shoddy research: that’s the accusation. The difficulty with that is that with the advances that have taken place in technology (and therefore in the types of data we can collect) we don’t seem to be sure what we’re looking for at the moment. The research is exploratory, and hopefully well soon know enough to design better research. That’s how science works.

One thing that will not happen: we will never arrive at some final conclusion about dyslexia, one that allows us to simply say, “so there you have it.” That’s not how science works.

Want to know exactly what dyslexia is? Ask me again in 10 or 15 years…

In recent days I’ve been involved in a discussion on a listserv hosted by the International Reading Association (I’m an IRA member) about dyslexia. The listserv promotes discussion among professionals who work in the field of reading.

The discussion recently has been fruitful for me. We have a listserv member who (for a variety of reasons) objects whenever the word “dyslexia” is mentioned on the list. He doesn’t believe in it. Some listserv members seem to think of him as a curmudgeon; others seem to see him as something more like light unto the gentiles, a savior for the reading community. And many wish, simply, that he’d shut up (which is about what they also think of me). His name is Hugo Kerr. And he resides in Wales (where I myself have some ancestral ties).

Without going into much detail about Hugo at the moment (I’ll do that in future posts), I’ll just say this for now. Hugo has made me think recently about what usefulness the concept of dyslexia has. My conclusion is that it has very little usefulness.

My county’s school district brought in a woman to speak to us a few years ago at a workshop for elementary grade teachers. Her name was Susan Barton. She was impressive and convincing as a speaker. She talked about dyslexia. We pursued the issue. Many in the county (me included) were trained in instructional methods designed to address problem associated with dyslexia. And we looked into methods for identifying dyslexia in our student population.

What we discovered was that identifying dyslexia is time consuming and expensive. And the issue went away.

My recent conversations on the listserv with Hugo have made me think again about dyslexia. And what I’ve clarified for myself is this: There is no apparent benefit in the framework of American education to going the whole nine yards and determining (with whatever degree of certainty is available) that a student does or does not have dyslexia.

IDEA 2004, the law on disability in the US for American education, runs to just over a gajillion words. The term dyslexia appears in the law exactly once – as part of a definition for the far more important legal term specific learning disability. It is given as an example of conditions that may be included under the label of specific learning disability. Dyslexia itself is never defined in the law.

Nor is it defined (or even mentioned) by the Diagnostic and Statistical Manual of Mental Disorders (the DSM-IV). That document gives medical diagnostic criteria for ADHD, Asperger’s syndrome, autism, bipolar disorder, conduct disorder, mental retardation, tourette’s, and much more. It doesn’t acknowledge the existence of dyslexia.

If a child can’t read (or can’t read as well as they should), my job as an interventionist is to ask why. I start to look for approaches to instruction that would help them. The truth seems to be that the concept of dyslexia doesn’t help me with any compliance issues related to federal or state law (my state’s special education law merely parrots the single mention of dyslexia in federal law). And while I know that some children benefit from a multi-sensory approach to reading, or from particular types of structure in the instructional framework, I can’t see that being able to say that this or that child is “dyslexic” is helpful in any way.

So I guess Hugo wins that one…