What follows is an excellent example of how an optometrist created an opportunity to help educate his own professional organization about stuttering. A chance meeting with an American wearing an NSP sweatshirt, provided impetus to his learning more about stuttering, and to sharing the following information with his colleagues in August, 1997. The paper was delivered at "The Invitational Skeffington Symposium on Vision" which was held in Rosslyn, VA.; Exotropia refers to outward deviation of the eyes. (JAK)

Severe Stuttering and High Exotropia

by Stanley Kaplan, MD, Washington, D.C.

Last summer, I was riding in an old Russian car through the mountains of Eastern Iceland with two Americans. The driver of the car told me as we descended a steep hill on a gravelly road with no shoulders, that a few months earlier at this point she had nearly blacked out, as if having an out-of-body experience, and had almost gone off the road. This had been brought on by her stuttering while she was talking to a passenger. Up to that point, I had never thought that stuttering could be responsible for my death, so I immediately started talking, and commented on how beautiful the scenery was.

The other passenger was the driver's friend, a college student from the Midwest, who spoke with the most severe stutter I had ever heard. Last year he had a severe emotional crisis and had to be hospitalized. His depression could have been brought on partly by his stuttering.

For the next three days, I lived in a house built of Norwegian wood (like the Beatles' song) with two people who stuttered, and was very impressed with the patience, encouragement and tenderness shown to the person with the more severe stutter. I, on the other hand, found myself very impatient in listening to the young man, and wanted to finish his sentences. I tried to cheer him up and overcome my own anxieties by saying that his stutter could be of great benefit, since so many people loved to talk, and he could simply be a great listener. But then I realized how thoughtless this was, since he probably had as much to say as anyone.

I wondered how I would feel if I stuttered. Would I keep my mouth shut? Would I feel like an exile? Might I be unlike other people in the way I acted, thought and lived? Would I feel great sorrow because I could not do what others take for granted? Would an awkward tongue mold my life? What levels of dread and panic might accompany speaking situations?

If I stuttered, how would I feel going into a store when I needed to ask a clerk for something? I think I would feel very young - like a boy who has lost his mother. I would be afraid, frustrated and helpless. I might feel stupid if I spoke. I might be angry at store clerks and customers who might be silently asking, "What is wrong with him?"

The experience in Iceland inspired me to learn more about stuttering. I read, for example, that some parents tell a stuttering child to shut up. A child who stutters may be reluctant to ask questions in class. People who have supposedly overcome their stuttering as a child will sometimes make a person who stutters feel inadequate or guilty that they have not been able to overcome their speech problem.

A teenager who stutters may be reluctant to use the telephone to ask someone out on a date. Someone who stutters might choose an occupation that does not require much speaking. Paradoxically, many people who stutter, like the student in Iceland, major in speech science in college. And the driver in Iceland hoped to become a speech pathologist, the way psychology is chosen as a specialty by some people who are curious about their own emotions.

One of the most annoying characteristics of people who stutter are called "secondary symptoms." People who stutter often look away from the listener, that is, maintain poor eye contact. There may be jerking or other movements of the head, excessive blinking of the eyes, quivering of the nostrils, and pressing the lips tightly together. A person who stutters may substitute an easier word for a more difficult word.

Many people who stutter have been teased, laughed at, mocked, patronized, and treated as intellectually inferior. Sometimes, the result is that they are not as outgoing as they would have been had they not had this disorder. They might not be as willing to express anger openly, even though few people stutter while they are swearing. Stuttering can also lead to depression as part of the grieving process for the loss of normal speech and as a result of feeling helpless to change.

These are some of the ways that stuttering can influence a person's daily life activities. What I have left out of this talk is any discussion of definitions, causes, signs and symptoms, epidemiology, and treatments. Like most medical conditions, stuttering is a mystery and is not curable, although there are many theories and treatments.

I have chosen to discuss stuttering because there is more information about the effect it has on daily life than there is about most visual conditions. Whether one is a speech pathologist or an optometrist, the tendency is to diagnose, list signs and symptoms, and to evaluate the effects of treatment based on quantifiable data. But this has little to do with how a person lives life with a disorder. Any disorder, whether it is stuttering or exotropia, affects the quality of life of the person with the disorder as well as others with whom he or she comes in contact.

How a disorder affects the quality of a person's life is determined by the extent to which it is manifested as both a disability and a handicap. A disability refers to all the events that are the behavioral manifestations of a disorder, which are both audible and visible in regard to stuttering, such as loss of eye contact and long periods of silence. By contrast a handicap comprises all the disadvantages that result from reactions - feelings, attitudes, and adjustments - to the audible and visible events of a person's stuttering, including that of the person who stutters him/herself.

The severity of a disorder may differ from how handicapping it is, and this too affects the quality of life. For example, the movie character Forrest Gump had a disability but was not particularly handicapped. A person who is a paraplegic may have less of a disability when using a wheelchair, but may still be handicapped. Someone with a facial tic may have a slight disability but a moderate handicap.

A person with a more severe stutter and disability may have less of a handicap than a person who has a moderate stutter, since a person with a severe stutter knows he will probably stutter and can predict how listeners will react to him. But a person with a moderate stutter may be apt to conceal his problem by not talking unless absolutely necessary. Deep shame and frustration may result from remaining silent when one has something to say, or failing to make initial verbal contacts in establishing human relationships.

A person who has high exotropia may have a greater disability but less of a handicap than someone with an intermittent, moderate exotropia. It depends on the person's reaction to the condition, which is partially determined by onlookers, especially family and friends. These reactions can even have monstrous results. For example, in Mary Shelley's novel 'Frankenstein" the creature was a nice guy who was miserably eager to be loved but was rejected for his hideous appearance (a disability) and turned to evil.

An evaluation of a treatment program for any disorder should emphasize whether a person's handicap has been changed, so that certain situations are no longer avoided. This would be just as valid for a visual condition as it would be for a speech disorder. The relative lack of material about how some visual conditions such as amblyopia or strabismus can affect the quality of life leads me to wonder whether eye doctors are less concerned with this issue than with collecting data, or whether people with these disorders are very handicapped by them.

Quality of life is also affected by the name given to a disorder, since some terms are stigmtizing. Doctors place great emphasis on diagnosing disorders, and often characterize people by their diagnoses. For example, is a person who stutters a stutterer? This is a very important question because it affects a person's identity and self-image. The most famous person thought to have stuttered was Moses, who was so reluctant to speak that he asked his brother Aaron to speak for him. Yet no one would refer to Moses as a stutterer or former stutterer. Consider other famous people who have stuttered: Charles Darwin, King Edward VI, George Washington, Teddy Roosevelt, John Updike, and Marilyn Monroe. Certainly no one would characterize Marilyn Monroe as a stutterer or former stutterer, since she had other distinguishing characteristics.

Other less celebrated people who stutter may nonetheless be intelligent, beautiful, kind, gentle, talented, and so on. We are more than the way we see or speak or look or what we do. But society and doctors refer to people as stutterers, even though this condition is objectively a neutral one, neither good nor bad. Similarly, people in wheelchairs are not handicapped, unless we characterize and stigmatize them as such. This tendency to pigeonhole people by their disorders also applies to visual conditions, so that speakers at this meeting and others will characterize people as amblyopes, strabismics, myopes, etc.

A disorder describes a process, not people. People with the same diagnosis may be quite different from one another in many important aspects, including symptoms and perceptions. A high myope may have more in common with a person who stutters than with another myope. Do not assume that there are sharp boundaries between visual or other disorders, or between any disorders and "normality." There is a continuum in any condition.

What is abnormal? Is abnormal that which is unusual? If so, then very bright people are abnormal as are those with 20/10 visual acuity.

Clinicians, whether they are speech pathologists or optometrists, like to diagnose and test people because it pushes them away from their patients, which serves to reduce the anxiety of doctors by making them feel safer and more in control. This is a disservice because it ignores patients' individual feelings and needs. Doctors should concentrate more on how any condition affects the quality of life of individual patients.

For more information on how stuttering can affect daily activities, I would recommend reading a book published in 1997 entitled "Stuttering: A Life Bound Up in Words" by Marty Jezer (Basic Books).

added with permission of author, September 15, 1997