<< TABLE OF CONTENTS>>

1. LETTER FROM THE EDITOR
2. WHERE DID THEY COME FROM? The Emergence of ADD/ADHD in Our Schools and Our Society
3. DISABILITY - THEN AND NOW

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<< LETTER FROM THE EDITOR >>

The January DAIS Newsletter included an article regarding the impact (or not!) of the recent Toyota v. Williams case on what we do in higher education. I finished that review with this:

<< In the meantime, I am working on a theory that "substantial limitation" must be judged not only on a case-by-case basis as to how it impacts the individual in question, but ALSO as to how important it is in the various settings/circumstances we encounter. Stay tuned!!! >>

What follows is the promised theoretical discussion. This edition of the DAIS newsletter is not providing definitive information on ANYTHING. I would remind you that I am NOT an attorney. The speculation and mental meanderings you are about to read are nothing more or less than some interesting threads that have been floating through my head for some months now. How useful those threads are to you in spurring you to develop a philosophical approach to service delivery is a decision that will be made individually by readers. It ain't Shakespeare, but I hope you find it thought-provoking.

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(REPRISE from Fall, 2000)

<<< WHERE DID THEY COME FROM?
The Emergence of ADD/ADHD in Our Schools and Our Society >>>

In the early 1950's there was a great flurry of activity within the field of speech pathology related to a developing theory in the treatment of stuttering. Researchers had found a group of Native Americans in the Pacific Northwest in which there was no stuttering. For a couple of years they studied those poor souls in every conceivable way -- their child rearing techniques, their physiology, their language structure, their galvanic skin responses! The thought was that if the researchers could determine how this population was different from the general American public, they would learn what caused stuttering, and therefore find more effective ways of curing it. After a couple of years, reports of these studies quietly faded out of existence. It turns out that what you and I know as stuttering DID exist in this population. Because verbal communication was neither an important nor a prized ability, they had never bothered to put a name to the verbal behavior that we know as stuttering because it never mattered to them if someone engaged in such behavior. In that culture, stuttering was NOT a disability. But a person who engaged in that same behavior moving into OUR world, would have had a disability.

I also remember reading about the people of Martha's Vineyard (the famous island off the coast of Massachusetts) who, for many years in the early history of our country, were relatively isolated. They had a large population of congenitally deaf individuals (big families with lots of in-breeding because of their relative isolation and thus limited choice of partners among the major families). As a result, everyone on the island knew sign language. Therefore, being deaf was not a disability on Martha's Vineyard. It only BECAME a substantial limitation to the major life activity of communicating when a deaf individual left that culture and attempted to move into a new environment. In both of these examples, the limitation which WE consider a disability existed, but it was not a handicap -- there were no social consequences as a result.

Let me shift gears and talk about a different scenario. In the mid-1970's, I had some fascinating conversations with a friend/colleague who was working on his dissertation in the field of audiology. He had done a study of the incidence of acquired hearing loss in the adult population of Alaskan natives, comparing his findings against a similar study done 20 years earlier. The results were startling. Where the earlier study found minimal incidence of such hearing loss, my friend's testing revealed a dramatic increase the incidence of such loss, especially among adult males. Why? Because of the introduction into their society of (loud!) snowmobiles, high-powered rifles, outboard motors, and so on, without adequate attention paid to protective measures to guard against both the high volume and the percussive impact of such sounds in that environment. Thus was born my awareness of the possibility of "disabilities of modern society."

Then, a number of years ago, I attended a seminar at which a series of papers were presented regarding disability and the cultural overlays shaping incidence and consequences in the Pacific basin and the Pacific rim. I was struck by a presentation about an island in the South Pacific (I believe it was near or part of Samoa), in which fully 35% of the adult population had late-onset diabetes and were insulin-dependent. Thirty-five percent!!! Why? Because of the clash of cultural mores and modern conveniences. This was a society in which "big is beautiful" -- the more weight you carry, the more mana (power) is attributed to you. Thus, what we in the States would consider to be over-weight is considered an enviable state there. Moreover, as adults age in that society, less is expected of them in terms of physical labor and activity -- the hard work is to be done by the younger folks. The older you are, the more sedentary your life style. Enter the availability of imported foods from the outside world (a status symbol in and of themselves), with empty calories and refined sugars largely supplanting the healthier diets of vegetables, grains, and fish, that have been the staples of this society for many years. Voila! A disability of modern society that leaves 35% of the population as insulin dependent diabetics!

In both of the instances cited above, the introduction of something new into the society (something typically thought of as progress!) had the effect of triggering the emergence of a new population of individuals with disabilities. The disability isn't new, but the incidence of that disability in these populations was new. AIDS and HIV+ disease would be an example of a NEW disability emerging because of societal change. In a funny way, even the sharp rise in the number of folks we see with Traumatic Brain Injury (TBI) could be seen as a disability of modern society. We now have many individuals who survive devastating head injuries with lasting, disabling consequences -- individuals who would not have survived their injuries in an earlier age with less effective medical treatment available. All of these are examples of ACQUIRED disability.

So why am I telling you all this???

As we all know, there has been a HUGE increase in the number of students identified with ADD/ADHD in recent years. Indeed, the fact that we are seeing such large numbers of students experiencing these problems (presumably out of nowhere) has added fuel to the arguments of skeptics who contend that ADD/ADHD is just the latest flavor in the Disability-of-the-Month Club and doesn't qualify as a REAL disability (their words, not mine!). In late July, in the midst of a listserv discussion of other aspects of ADD/ADHD, I was intrigued to read this post from Michael Penrod of Eastern Washington University:

<< Over the last couple of years I've come to wonder if ADD/ADHD may not actually be a product of an information age society. By that I mean we now put more of a premium on things that people with ADD/ADHD find difficult to do. To me this involves things like working in an office, working with other people, etc.

Even 25 years ago the person who was a bit eccentric but good with his/her hands had a more clear niche in society. And, the person who couldn't fit into the structure of a school classroom could drop out and still had reasonable avenues in life. But, with increasingly sophisticated technology becoming so pervasive and our focus on "information" these people no longer have a niche. >>

Michael's suggestion tends to mirror the idea of a disability of culture -- like the (stuttering) Native Americans, there is only a problem -- a substantial limitation -- when the individual is enmeshed in a culture that prizes abilities not available to him/her. Perhaps we see a huge increase in the number of individuals who bear the label of ADD/ADHD because we now value a different set of skills and abilities. We have always had the percentage of folks with ADD/ADHD, but their difficulties in focusing attention only became an issue in a society/culture that suddenly values -- even INSISTS ON -- just that ability. A plausible hypothesis. But Michael's suggestion got me thinking along other lines, as well.

What if ADD/ADHD is something we have created in our ever-evolving world? What if the very methods we use to teach children today, hailed as classroom innovations, are responsible in some way for the emergence of learners who have significant difficulties in attending, thus in learning. Educators have trumpeted the introduction of self-paced instruction. Elementary classrooms are likely to have reading nooks in the corner, a "science area" at the front of the room, and student desks grouped in pods to promote peer interaction and group learning. A far cry from the straight rows of desks and the sterile learning environment many readers will remember from their school days.

For children who are prepared to take the responsibility of guiding their own learning and who are able to cope with the challenge of making choices, such environments provide tremendous potential. For those who are less able to cope with this responsibility and challenge, the learning environment we present to them may be overwhelming. There is something else missing in today's open classrooms -- the classroom teacher standing at the front of the room, expecting all eyes on him/her, strict "no talking" rules enforced, while structured lessons with much rote content are taught at the same time to everyone. The key word in that last sentence is probably "structured." The classrooms many of us grew up in provided an enforced structure for one-and-all, like it or not, need it or not. But today things are different. Could the very environment that may be more conducive to learning for the majority of children be the catalyst for the development of problems in others? Just as the introduction of new dietary choices for the natives of Samoa has triggered health problems in some, could the introduction of new teaching methodologies and learning environments have triggered learning/attention problems for some youngsters?

Certainly, there is no reason to suggest that Michael's explanation and mine cannot co-exist comfortably. There is also no reason to suggest that what is posited here is anything more or less than speculation. But sometimes it is fun to play with ideas and to see if one can find logical explanations for seemingly illogical occurrences. It won't change the world. It certainly doesn't change our practices/procedures in working with students who are ADD/ADHD. But it is an interesting thought!

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<<< DISABILITY - THEN AND NOW >>>

In thinking through my hypothesis, I took out some old papers that expounded on the some traditional definitions of the words "disability" and "handicap." The World Health Organization essentially suggests that "disabiity" is an impairment within or of the individual, while "handicap" refers to the social consequences of the impairment. When I first got into this field (all those many years ago!) I used to explain it this way:

"The man who is paraplegic and uses a wheelchair has a disability, in that his spinal cord is injured and his legs do not function in a manner that allows him to walk. If he was planning on being a quarterback, he is going to find himself handicapped in that pursuit. If he was planning on being an accountant, he may not experience much of a handicap in the work setting. He can sit behind a desk and tote up numbers with the best of them."

As I dredged up that example it suddenly struck me that the definition of a "person with a disability" under 504/ADA actually blurs that distinction. While "disability" is used in the laws in a *legal* sense, to help define a population to be protected under the law, it may have created some of the problems we face today in determining exactly who IS and ISN'T included under the umbrella of protection. The terminology used is "disability," but the focus on "substantial limitations" seems to speak to social consequences. An interesting thought, but it didn't get me any further until I went back and looked at the example again.

It seems to me that we have always recognized that how significant the impact is (how "substantially limited" one is) must be judged against what it is that someone is trying to accomplish. We have acknowledged that the existence of a given impairment to the system will have differential impact on people who find themselves differently situated. The same significant degree of hearing loss may impact differently on the telephone operator than on the computer programmer. I would submit that those acknowledged differences in impact actually represent a long-standing focus on "major life activities" (terminology taken from the statutes) NOT as a series of specified tasks or activities that everyone does the same way, but rather as reflected in who you are, and what you are doing, at any given point in time.

What difference does it make? Just this... The fact that it is difficult to show a significant direct impact on job performance as a result of LD or ADD/ADHD does NOT mean that it is difficult to show a significant direct impact of such disabilities on the major life activity of LEARNING for someone who spends their life in the role of "student" instead of the role of "worker." The individual who is essentially print-blind may not be substantially limited if his/her waking hours are spent creating flower arrangements, or sculpting, or working as a greeter at WALmart. But that same level of impairment is clearly a substantial limitation if the SAME individual spends his/her waking hours in the role of college student, expected to read, study, and take tests traditionally delivered in print format.

A friend and colleague from AHEAD has a substantial Attention Deficit Disorder. (I have always maintained that when you look up "ADD" in the dictionary, it has this person's picture next to it!) While friends tease about how it impacts on his pursuit of his duties AND on his social life, the fact remains that he has risen (rightfully so!) to a position of considerable influence within his institution because he is damn good at his job. I have heard this individual tell stories about his academic career. It is lucky that he found his way to his present position because he was a LOUSY student. He made it through college on the basis of his charm and affability, rather than his academic competency. His ADD was devastating to his college career. I can think of another colleague who had a similar experience in college but has enjoyed a brilliant career POST-college, despite his significant learning disability. It was significant when he was a student, but he can manipulate his job in such a way that it is less significant now.

This newsletter is late in reaching you because I couldn't figure out a way to end this speculation. It just came to me. My grandmother used to say,

"Morals are a matter of time and geography."

Maybe both "disability" and "major life activities" are, too! GRIN

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(End of newsletter)
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May, 2002 Volume VI, No. 5

Jane E. Jarrow, Ph.D.

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