The Doctor's Story

When Earl Carlson was a child, his father threatened to beat him because of his cerebral palsy. In his autobiography Born That Way, Earl noted that CP affected the muscles in his face that control smiling. As a result, he had “a tendency to grin all the time, quite regardless of whether I felt happy or sad.”

To make matters worse, Earl was often unaware that he was smiling. His father however, was acutely aware of son’s seemingly constant grin. During a period when his father had great difficulty finding a job and would come home discouraged and broke, Earl writes that he “either got rid of the grin or got a licking.”

Earl faced a host of problems other than his father. His birth was difficult, and a doctor used forceps which left a permanent scar on his head. Walking was difficult as a child, and he crawled so often that calluses developed on his hands and knees which his mother had to remove with a razor. Swallowing was a burden because he gagged easily. His arm “wandered aimlessly” and often he could control the arm only by sitting on it. As he grew older, crowds petrified him—he believed that people were talking about him, and he would not eat in public by himself until he was 18 years old.

Fear of crowds made school an ordeal. When called upon to speak, he would get tense, and his “arms and legs would start shaking uncontrollably, my breath would fail me, and my actual speech difficulty would be outrageously accentuated.” The mere thought of moving even his finger would send his entire “body into a chaos of withering movements.” He fell frequently, and had to enter and leave classrooms before the rest of his class because if he were jostled by a classmate he would tumble to the ground.

Earl’s endured adversities other than those created by CP. Money was scarce, primarily because his father was frequently unemployed. His father, who became depressed and drank heavily after the death of his wife, committed suicide when Earl was 22.

COPING STRATEGIES

While Earl developed a number of strategies to deal with his CP, the most important of which was self-discipline. Earl believed that by focusing his attention solely on the task at hand, he could banish emotional factors such as anxiety, fear and self-consciousness that would otherwise make his body impossible to control.

When he was a child, for example, walking and coordination were so poor that his friends pulled him in a wagon. But one day, they passed a fruit stand and “before I knew what I was doing, I had stretched out my hand and grabbed an apple.” At the time, Earl could not feed himself, and swiping the apple was the first time he had ever voluntarily reached his arm to pick up an object. He believed that the challenge of getting the apple without getting caught overcame the self-consciousness and flailing arm movement that would have prevented him from grabbing the forbidden fruit.

THE BREAKTHROUGH

Earl was intelligent, ambitious and eager for an education, even though some schools told him that his disability would make learning impossible. His discipline and persistence however, produced stunning results. He studied at the University of Minnesota and Princeton, and graduated from Yale Medical School. He founded a clinic to treat young children with CP (his wife helped him as an administrator) and the clinic served as model for other clinics in the United States, Latin America and Australia. Years later, organizations around the world pay tribute to the man who helped children with CP achieve results that no one else believed possible.

The clinics offered the standard occupational and physical therapy available elsewhere. But Earl attributed the success of his clinics to the unique emphasis the clinics placed on discipline to eliminate fear and anxiety, and to the classroom studies that had contributed to his own success. He wrote that “…only through education [does a child with CP] has a chance of becoming socially useful instead of a burden on society.”

Writing in the early 1940’s, Earl acknowledged that some children with severe CP would not be able to acquire a formal education, He insisted however that “they should not be treated as idiots, however, receiving only custodial care; ways must be found to keep their brains busy, in order that they may develop mentally as much as they can.”

Earl’s belief in discipline and education can hardly be overstated. An intelligent child with CP, he writes “is happy, no matter how seriously he may be afflicted…[but] as he grows older and becomes more self-conscious, there is serious danger of his becoming a social misfit unless he receives careful guidance.” Earl published his autobiography in 1941. Decades later, his warning about social misfits were echoed by Nancy Mairs’ in her autobiography Waist-High in The World A Life Among the Disabled. Mairs, who has MS, wrote that “Beyond cheerfulness and patience, people don’t generally expect much” of a person with a disability.

IS EARL A ROLE MODEL?

Could Earl have achieved his personal and professional accomplishments without the discipline and concentration which began by eliminating the smile that infuriated his father? Is a child with CP doomed to become a social misfit if parents and teachers do not provide guidance that includes a healthy dose of discipline?

Earl’s story left me troubled, in part because I have always been complimented on my smile and because I sometimes smile and am not aware of the smile. And I can hardly be called self-disciplined. During 60+ years of living with CP, I focused on the activities that I could do, and pretty much avoided activities that were difficult.

Earl would be dismayed to know that even though I passed all the exams required for a P.hD, I nevertheless dropped out of school because writing a dissertation would have required more than a year of note-taking. My handwriting looks like chicken tracks that sometimes even I can’t read, and in the era prior to the invention of laptops, I couldn’t bear the effort that more than a year of writing up interviews and writing notes from journals would have required. Earl surely would have been disappointed with my decision to leave school, as I am myself from time-to-time.

I comfort myself by say that in today’s world of the ADA and offices on most major campus to assist students with disabilities, Earl’s dogged determinism is not required in order to earn a college degree. And I firmly believe that Earl’s ability to control his movements is not typical of most people with CP. My right arm still leads a life of its own. I don’t sit on it as I did when I was in my 30’s and sensed that the woman with whom I had just finished dinner might be agreeable about going back to her apartment for a drink. But I know that no amount of discipline and focus will ever make anyone mistake me for a brain surgeon.

Still, Earl has created an itch that doesn’t seem to be going away any time soon. Am I undisciplined? Should I go to the gym more often to practice exercises that improve my balance and coordination? Should I take a nap until these nagging thoughts go away? At the very least, this fellow with CP has a story that will impress (and unsettle?) both disabled and non-disabled people. The book is out of print, but can be located on websites that sell old and rare books.

David Bauer
Guioco@aol.com

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