The Fragility of Who We Are.

Renée Fuller, Ph.D.

Copyright © 2004 by Renée Fuller

     The mother who was ushered into my office had a haunted look and a distraught quality that was at odds with her elegant dress. She neither turned nor said anything to the three-year old who was following her. The child, as soon as she saw a toy truck sitting on the floor, pounced on it and with a frenzy began ripping off its wheels. With equal swiftness the mother, without saying a word, wrestled the truck out of her daughter's hands. But even before the truck had been put away the child had already zeroed in on a ball lying on my desk and tried to rip it apart. There was no interest in ball play, only repeated assaults on various objects around the room. The persistent attempts at vandalism were accompanied by a facial expression startling in its viciousness. The three-year-old managed to convey so much evil on her face that my appalled thoughts whispered "Satan's child."

     Efforts of "See, dear" as I bounced a new ball merely resulted in another assault on a ball. Did the child even hear what I was saying? Her only response was additional attempts at willful destruction. Speculating about a possible diagnosis I turned to the mother and asked, "What happened?"

     "It was encephalitis. They couldn't get the fever down. She's been this way ever since."

     "What was she like before?" I inquired, wondering whether the child had developed normally prior to the encephalitis. Did she have language? How much social development had there been? I had seen a number of post encephalitis cases before. They varied depending on whether or which parts of the brain had been damaged. But I had never seen a case like this.

     "We have movies of her two-year birthday party. She sang her own birthday song, and she was talking, telling us stories. Our pediatrician said she was way ahead for her age." This was said in almost a monotone. Then the mother opened her purse. Out came a color photograph. "This is what she looked like."

     The face looking back at me was angelic. Its expression was one of such love that I gasped. Then I did what as a professional we had been trained never to do. I burst into tears. And so did the mother. We fell into each other's arms crying over the child that was gone forever; a beautiful loving child who had been replaced by someone sinister from another world.

     The scene which happened years ago has haunted me ever since. It was an unforgettable manifestation of the fragility of our very identity, a terrifying reminder of the power that diseases, that genetics, that environmental catastrophes can have in altering who we are. And it was also a reminder that even our daily functioning can fluctuate depending on a host of factors from hormones, to bacterial infections, to the treatment and expectation of the people around us.

     Terrifying as this reality is, there is the other reality: and that is that facing our fragility can be the motivating catalyst to help stabilize us and even transform us into someone more understanding, more creative and perhaps more intelligent. Being living creations we can be influenced and changed by the world that surrounds us. And it is we who, at least in part, can create positive or negative outcomes by what we do for and to each other. The history of our sciences, our religions can be viewed as the story of our efforts to gain control over human fragility, to direct human identity, to exert control over who we are - who we can become.

     Much of human struggle has been to counter the frailty that is life. Through medical intervention we attempt to reduce the effects of diseases and accidents, to chemically influence our moods, even to enhance our ability to think. In my own lifetime there have been dramatic advances in the sciences and their applications from vaccinations to sanitation, to magnetic resonance imaging (MRIs). These and social changes have enhanced the lives of millions of people. They have begun to alter the kind of humans we are, raising hopes for the kind of human we might become. Among today's societal developments have been what are still embryonic innovations in education and human rights.

     One example of an innovation in education that I personally participated in, and witnessed as the data unfolded, is described in the book IN SEARCH OF THE IQ CORRELATION. It details research results with the Ball-Stick-Bird reading system that successfully taught reading to students with IQs below 50. Peculiar to this reading system is that it utilizes findings from perceptual psychology and developmental linguistics and imbeds them in high context fast-moving stories. Presumably this was the reason for additional gains beyond simple literacy. These included striking advances in language production and in thinking which were far beyond IQ and chronological age expectations. The power of this kind of genuine literacy in creating cognitive and personality changes, including in severely intellectually challenged students, was startling as well as unexpected. Some students even changed in appearance to such an extent that they looked like different people.

     Reverend Peter's interventions highlighted the degree to which our human fragility can be challenged. His belief in the power of the innovative reading system was greater than mine. As the administrator of a large day care facility for the intellectually challenged he had already used the system with great success. When I visited, one of his charges, Lela, a female in her early twenties, was being given a Stanford-Binet IQ test. I watched and saw that her language production consisted of about two words. She neither connected with people nor with her own disheveled appearance. After seeing her tested the diagnosis of autism with an IQ of 20 was indisputable. There was no way I could imagine that Lela could become literate. How could she? She had no language, and was not connecting with people. But Reverend Peter who had seen with pride the success of his other charges was certain that Lela was not a hopeless case. He saw her as a precious human being waiting to be awakened.

     When I visited Reverend Peter's facility again several months later I was greeted in the hall by a number of his charges. One of them gave me a special greeting, smiling with both eyes and mouth as she mumbled a welcome. Reverend Peter came bounding out of his office "You didn't recognize her, did you?"

     Puzzled I said, "Should I have?"

     "You said she'd never learn to read, but you were wrong." This was said triumphantly. "The girl you didn't recognize is Lela. You saw her tested and you told me that no way. . ."

     I took another look at Lela. She bore no resemblance to the disconnected, disheveled specimen I had watched being tested. The young woman who had greeted me was a well groomed and talking human being whose smiling eyes had met mine. True, only someone who has worked with a retarded population would readily understand her Pidgin English. But she was communicating with words as well as with her eyes; belying the diagnosis of autism. At my suggestion the staff gave her another, an alternate, Stanford-Binet IQ test. Her new IQ was 35: a world away from her previous IQ of 20. However, according to intelligence theory a person with an IQ of 35 should not be able to read. And Lela was indeed reading. I watched her slowly deciphering several passages which she understood, as was apparent from the way she laughed at the shenanigans of some of the story characters and how she answered questions. The beaming Reverend Peter had succeeded in awakening another human being.

     Expectations are another factor that can have an impact on who and what we are. The dramatic transformations that followed the changed attitudes toward Down's syndrome children are an example. At the start of my career the expectation was that all Down's syndrome cases would be severely retarded and would have to be institutionalized. Nowadays we see most of these children mainstreamed in our schools, out in the community; and instead of dying in their thirties they are living into their forties, even fifties and perhaps eventually to a ripe old age.

     My pen pal Em was mainstreamed before it became school policy to place Down's syndrome children in the regular classrooms. Her mother insisted on it more than a quarter of a century ago after Em learned to read with the innovative reading system. As her pen pal I look forward to her moving letters, a testimonial to the potential power of literacy, to innovations in education and what loving parents can achieve for their children. Em's accomplishments show how such successful innovations, all the more when they are coupled with loving parents, will increase cognitive ability, thereby influencing, even determining who we can become.

     Also believers that human fragility can be countered, sometimes even overcome were and are Charlene and her husband. They adopted six-year-old twins with cognitive deficits and behavioral problems. When shortly after adoption the school tested the twins their IQs were in the sixties. Fifteen months later the testing showed IQs of 85. However, to the consternation of the parents, their teachers, who had been trained that IQs do not change, did not check the latest test results and therefore were unaware of the IQ increase. They continued to teach the youngsters with a curriculum intended for the retarded. And so Charlene introduced the two boys to the innovative reading system. Now twenty years later the boys are not only fluent readers, but are successfully employed as salesmen, and taking seriously the raising of their own children.

     Whereas the reasons for impaired functioning following accidents, environmental catastrophes or diseases are usually obvious, the powerful effects resulting from other people's opinions, including their perception of our abilities, tend to be far from obvious. Frequently we're not even consciously aware of the positive or the destructive power these opinions and expectations are having on us. How often do our feet shuffle, our tummies feel funny without our realizing that we're reacting to being regarded with contempt and/or expected to be a failure? In turn we tend not to take responsibility for the negative effects that our own expectations and treatment can have on others: although it is much easier to take credit for positive effects. Schools tend to deny the powerful consequences that test scores and the resultant teacher expectations can have on the cognitive development of their students. This despite the numerous occasions when these expectations are life enhancing or alas, life destroying.

     I remember one particular occasion when as a teenager I experienced the positive power of expectations. It happened shortly after we moved back to New York. My mother and I had gone for a late afternoon interview with the headmistress of the local select school. I was being looked over as a possible student. After the headmistress spent some time talking with me she proceeded to give me an IQ test. On scoring the test I remember her thoughtful look, which was followed by, "Well, it's late afternoon and the girl is tired. I'm sure she will do well in our school." She smiled approvingly at me and I was admitted. Later I found out, after sneaking a look at our school records, that my test results were so-so. However, the headmistress's expectations were a self-fulfilling prophecy. I did well in the school, despite the so-so IQ test. What would have happened had I been rejected because of the poor test results? Once you've been labeled "stupid" it's hard to be intelligent.

     Not so fortunate are the numerous children who have been diagnosed as dyslexic, learning disabled, ADHD, etc. The destructive power of expectations engendered by these would-be diagnoses is all too evident. Numerous children labeled as dyslexic and/or learning disabled never do learn to read. This despite the ease with which these same groups, even when they were severely retarded, became proficient readers with the innovative reading system. What a difference someone like the Reverend Peter could make in the lives of our many failures!

     Could we restore the post encephalitis child who has haunted me all these years to her original self? Given our present state of knowledge that seems highly unlikely. But eventually with the development of brain implants, gene splicing, stem cells - these are the interventions of our future. However, our present state of knowledge already allows for many successful interventions in human fragility.

     We are such complicated creatures; there are a multitude of things that can go wrong with us; which is why we are so vulnerable. But it is our very fragility that gives us the plasticity which allows the many physiological, medical, and psychological interventions. Already in today's world we can have a powerful influence over who we are, who we want to become. And it is the yearning for who and what we might become that drives our efforts in the sciences, in education, in ethics as well as in our efforts to encourage greater achievements. This yearning allows us to dream about the possibilities of our human future; to dream about the creature we want to become. It is in our hands and minds to create a beautiful human identity.

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© 2002 Renée Fuller
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