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So what is it?

An excerpt of the first chapter of Anne Ford's book: "On Their Own"

Recently I was called in for jury duty in New York City. There is no better way to find a cross section of people from all walks of life—different income levels, education levels, interests, different everything. It is true democracy in action, and it is often the only time such varied communities overlap. During one of the interminable breaks while waiting to see who would be called up to serve on a jury, a few of us sat around and began to talk about our lives. One man was a retired certified public accountant, a woman was a secretary in a law firm, and another was a young mother raising three small children at home. When they asked what I did, I told them of my advocacy work on behalf of learning disabilities, and immediately the conversation swerved into that lane.

First of all, as everyone with an LD child knows, it is nearly impossible to go anywhere without meeting someone who has a child or a relative with LD, or a friend who has a child with LD. Jury duty, airplanes, grocery stores, dinner parties, it doesn’t matter where, chances are good that someone there knows or is related to someone with LD. From this we can assume it is a widespread condition and one that touches all levels of society. So why is it that this condition is met with a form of mass confusion?

“So what is it?” the retired accountant asked me. “I mean, I’ve heard the term ‘learning disabilities’ before, but what is it? Mental retardation? Autism?”

“It’s neither one,” I said. “It’s a neurological disorder. Think of it as the brain being wired a little differently than most.”

“It’s dyslexia,” said the young mother. “My son has it. He mixes up letters when he reads.” From the way she said this, I knew that her son had a mild form of dyslexia, and that to ask her about issues such as independent living or classroom accommodations would result in an uncomprehending stare. I tried to make the point that not all LD is the same, and there are wide ranges of severity.

“So is it like mental retardation?” the man asked again, and once again I said, “No. Sometimes, in fact usually, you can’t tell if someone has LD or not.”

“Is it autism?” he asked.

“No, it’s not autism, either.”

“So what is it?”

I went into greater detail, this time talking about the really difficult challenges presented by social skills, and this time the man said, “You know, I have a friend whose daughter has all the things you said. She stands too close when she talks, she always talks in the same tone of voice, really loud . . . and even though she went to school, she just can’t seem to get things. And I ask my friend all the time, ‘So what is it?’ and he doesn’t know. But it sounds like what you’re talking about.”

“Yeah, I also have a friend,” said the secretary. “Her son is, what, maybe twenty-three or four now, and he’s the same way. Still lives at home, and he’s lost job after job . . . but my friend never said he has dyslexia or anything. Maybe ADD.” This added thought brought in a new twist to the story. “Is ADD the same as learning disabilities?”

“Not the same,” I said, “though many people with LD also have ADD.”

“So if he has ADD he doesn’t have LD?”

“Not necessarily. He could have both. And there’s also ADHD, which is Attention Deficit Hyperactivity Disorder.”

“So . . . okay, so . . . ,” the man said, squinting behind his glasses in confusion. “So what’s it all mean—that they can’t learn?”
“It’s more than that. It affects everything in their lives, not only schoolwork.”
“So it’s not mental retardation, right? You’re sure of that?”
“I am.”
“I still don’t get it,” he said after a short pause. “If it’s not mental retardation, then what is it?”

He could have asked me four or five hundred more times and I’m not sure I could have explained LD in a way that would have made him understand. I did not get frustrated by his inability to get it right away, because I have had years of exposure to all the best and brightest in the LD field and still, when someone asks me outright, “So what is it?” my reaction is to try as hard as I can not to say the first thing that comes into my mind, which is usually: “I have no idea.”

It is so hard to define learning disabilities. Dyslexia is the one most often grasped by the general public, not as a term for a condition that covers all forms of reading disability (which it is), but as a way to describe the reversal of letters or numbers. We can all visualize someone doing that. We may have done it ourselves, while taking down a phone number, for instance, and writing 489 instead of 498. We may even look at that simple error and think, “I wonder if I have dyslexia?”

But what about cognitive learning disabilities? How do you explain an inability to understand an abstract concept without leading the listener to the inevitable, “So is it mental retardation?”
The problem is that there is no single definition of a learning disability. LD is not any one thing, but rather an umbrella term used to describe any number of behaviors that are unexpected in individuals who are accomplished in learning in other ways. The only way to accurately define it is to explain the full range of problems encompassed by the term, but even then the possibility of accurately describing every specific combination of learning disabilities is next to impossible as every learning disability is unique.

Here is a broad description:

  • LD affects people’s ability to interpret what they see and hear, or their ability to link information from different parts of the brain, because their brain is “wired” a little differently. These differences can show up as specific difficulties with spoken and written language, with coordination, with self-control, or with paying attention. People can have learning disabilities in reading, writing, and math, and in processing information (and they can have difficulties in one of these areas, two of them, or all of them). Most children and adults with LD can read words, but they may not always comprehend the meaning of the words. Learning disabilities can reach into personal relationships, since they often cause difficulty in common, everyday interactions with others.
  • Learning disabilities are not confined to childhood or to the classroom. They continue throughout people’s lifetimes and touch upon every aspect of their lives, from school to jobs to relationships with family and friends. Even though they touch upon these aspects and influence them, however, they do not necessarily lead to failure in any of them.

The term “learning disabilities” is itself a source of some controversy. Many experts and prominent educational specialists dislike the word “disabilities” and replace it with “differences.” To them, saying that people have a disability means the same as saying they are flawed or that something is truly wrong with them, whereas saying that people learn differently means simply that—they learn things in a way that is different from that of most others. I understand the thinking behind this, though I still favor the word “disability,” more for practical than for personal reasons. Through my work with the National Center for Learning Disabilities and its advocacy efforts in Washington, D.C., I have learned that government agencies in charge of funding and changes in the law are only interested in disabilities—not differences.

Now that my daughter is out of school and I am focused on the difficulties faced by adults with LD, I often find that of the two words in “learning disability,” the first one causes the most problems when trying to explain what LD is.

The issue of disabilities vs. differences doesn’t matter so much when talking about an adult, but the word “learning” is so tied to the classroom and images of homework, textbooks, chalk, and blackboards that you can’t help but imagine rows of children seated at their desks, frustrated by their inability to solve a math problem. Few of us associate “learning” with the adult sitting in the front seat of his own car, frustrated by his inability to read a road map or figure out which direction to take.

I’ve never seen a survey or conducted a poll about this, but I would be willing to bet that most people when asked about learning disabilities assume they are a childhood issue, maybe one involving teenagers too, but soon after graduating from high school things settle down, and the issue is no longer relevant. Wrong. Oh, wrong, wrong, wrong.

“All right,” they may say. “College, then. Sure, I suppose LD could cause some trouble in college, but after that . . . ? No.”

Wrong again.

There is no cut-off point. No statute of limitations. What caused trouble in second grade in school can still cause trouble on the second shift at work.
Learning may in the end be the only word that encompasses enough of the various manifestations of the disability to give some idea of what we’re talking about, but even so, it is inadequate, especially when trying to explain or define the problem.

Another difficulty I have experienced, especially when it comes to those whose LD is severe, is that usually there are no outward signs of LD, no physical characteristics one can point to that give an immediate understanding of the situation. There are no wheelchairs, no crutches or braces. We have no way to tell if someone has LD until we are faced with a situation influenced by the LD, and this often comes as such a surprise or source of confusion and frustration that we meet the situation  with something verging on total incomprehension. “Why would she say that?” we might think after a coworker has just uttered a completely inappropriate remark, or “Why on earth can’t he understand this?” we wonder after explaining something five times.

During a phone conversation with a mother going through an unbelievable series of frustrations involving financial aid for her son’s college education, I casually said, “Sometimes it seems like it would all be so much easier if they looked disabled.” She gasped and fell silent, and I thought, “Uh-oh, maybe I shouldn’t have said that,” but she wasn’t shocked or upset at all.
“I hate to say this,” she whispered, “and I never, never imagined I’d tell anyone again, but I sometimes wish he was worse than he is. I said it to my sister once, and she thought I had gone crazy, but it’s true. If he was worse than he is, things would be so much easier.”
There is no need to feel guilty when such feelings arise. It’s natural, especially when so much in life depends on outward appearances. I read an article in The New York Times in which a mother in Connecticut with two sons, one with physical disabilities and the other with LD, told how much easier things were with the physically disabled son.

Think about it: How many people do you know who would look at a young man in a wheelchair and say, “Come on, stand up. I know you can do it if you just try”?
No one would dream of saying such a thing to a person in a wheelchair, but that’s exactly the sort of thing a child or adult with LD hears every day.

Excerpted from On Their Own: Creating an Independent Future for Your Adult Child with Learning Disabilities and ADHD by Anne Ford with John-Richard Thompson
Copyright © 2007 by Anne Ford
Reprinted by permission of Newmarket Press,