My son was the kind of student who is often ignored in a classroom. He was no real problem -- likeable, courteous, an above-average student in elementary school, although an average to below-average one in middle school and high school. He did enough work to get by, but often spaced out in the classroom. Where, his teachers wondered, did his mind go? He seemed bright enough, but couldn't seem to keep his mind on what was going on in class.
In tenth grade, although now a poor student, he was still able to shine in sports. My last recollection of those days was one crisp fall morning in November when he was put into a varsity football game at the last minute. Doug made the winning touchdown that day, and the coach was so excited that he gave him the football as a souvenir. A year later his days as a hero on the football field were over. Now he was in a psychiatric hospital, which called for a whole new brand of heroism.
Doug insisted that he had a brain tumor. Or maybe he was having a heart attack. The hospital labeled it a psychotic depression, but my husband and I were sure it was more than that. We picked up a book on schizophrenia and found our son on every page. But finding the right diagnosis proved to be a lot easier than finding the right medication. That literally took years.
Our son went back to school after his first hospitalization, but he was hardly recognizable as the same person. At times he had a goofy smile on his face as if he were listening to a joke that only he could hear. At other times his face seemed flat, devoid of any expression. If it had been hard to engage his attention before, now it was almost impossible. I remember having to over-enunciate each word and literally hold his face in my hands to catch his attention.
How did his friends react to all this? I can tell you they were terrified. I was a teacher in the school where my son was a student, and I saw how confused and frightened they were. First and foremost, they felt responsible for whatever it was that was happening to Doug. A caring psychologist tried to reassure them that whatever they thought they had done, they were not responsible for their friend's illness. But what was wrong with him, they wanted to know? That was a question no one was willing to answer. Confidentiality, they said. So Doug's friends continued to be wracked with guilt, thinking that something they did or didn't do had caused their childhood friend to turn into an unreachable stranger. And I'm sure they thought that if it could happen to Doug, it could happen to them too.
Of all the things I remember clearly from those days, now twelve distant years ago, I remember most my anger at the wall of silence which went up around Doug and his illness. Some might call it a protective wall, but I call it the wall of ignorance. That is why when I had worked my way through the grief and pain of seeing the child I had once known so well vanish, I put educating students about mental illness at the top of my advocacy agenda.
What if Doug's friends had learned in their health class about serious mental illness? Perhaps they would have recognized Doug's mental illness and tried to get him help. Maybe they would have spoken to a guidance counselor, a psychologist, a caring teacher, or maybe even to us, his parents. Maybe Doug himself would have recognized the onset of mental illness and spoken to someone about it if he'd learned about it in school. Maybe if my husband and I had learned about mental illness in school, we would have recognized the symptoms ourselves and gotten him help.
Maybe, maybe, maybe. There are certainly a lot of maybes. And we'll never know for sure, but one thing is certain. Ignorance and that towering wall of silence delayed Doug's getting treatment and may have cost him his chance at full recovery.
So what can teachers, psychologists, guidance counselors, and other school personnel do to tear down that wall? First, you must recognize that there is a wall, and I know from your presence here today that you want to understand, and I thank you for that. Then the next question becomes, what do we want our students to know about mental illness.
First, we need to teach them that mental illness is nobody's fault. Serious mental illnesses are brain disorders. They are not caused by bad parenting, a character flaw, or a fight with a friend. It is biology, not something we did or said that has caused this predisposition to some of the most devastating illnesses known to man.
Then we need to teach them what these illnesses are. What are the symptoms of brain disorders like schizophrenia, manic depression (bipolar), major depression, obsessive compulsive disorder, and anxiety disorders, which develop in childhood or more commonly in adolescence or young adulthood? What are the symptoms of brain disorders which children seem to be born with, like autism or Asperger's Syndrome?
Finally, we want them to understand that ridicule and harassment of students with brain disorders is no more acceptable than making fun of someone because they have cancer or a broken leg. Words and actions do hurt, and, in fact, some people say that the rejection and stigma they experience because of their mental illness is worse than the disorder itself. We can and must do something about that.
A young man, Brandon Fitch, who is now well enough to write liner notes for the Cleveland Symphony, has written eloquently about the abuse he suffered at the hands of his young classmates who had little sympathy for the symptoms of his childhood schizophrenia. He has written, "The teasing and tormenting at school just devastated me, whereas I noticed that the other children just seemed to let it roll off their backs. I would literally be emotionally paralyzed when someone made fun of me and often felt as if a knife had been plunged into my heart."
But it is not just students that need to understand what mental illness is all about. Teachers, for example, must be aware that what they may see as laziness or contrariness in a student may in reality be a symptom of mental illness. A woman writing about the onset of schizophrenia when she was a student recalled how her English teacher, well-meaning, no doubt, but frustrated by her apparent off-again, on-again approach to her school work, put a sign on her desk. It read: "A mind is a terrible thing to waste." From the teacher's perspective, this bright, former honor student was squandering a precious gift. From the student's perspective, she was trying with every fiber of her being to meet the requirements of the class, but could not concentrate because of the voices in her head and her hypersensitivity to extraneous sights and sounds.
Obsessive compulsive disorder is another brain disorder which is often misunderstood. We can all recognize raw, red hands which have been washed repeatedly and surmise why a student is asking to go to the bathroom so many times a day, but we are very likely oblivious to the much less obvious signs of OCD. A recently published newsletter put out by the OCD Foundation described a student who was unable to fulfill his math teacher's request that he do his work in pencil. Why? Because he believed that the lead from the pencil would leach through its casing onto his hand and cause lead poisoning. Of course, we cannot expect teachers to intuit what the problem is, but I would like to think that if teachers know a student's diagnosis, they will be open to the possibility that what appears to be stubbornness may actually be a symptom of their illness. Digging a little deeper and making appropriate accommodations could make all the difference in the lives of these fragile young people.
Finally, before I close, I would like to tell you about some materials that have just been published, which were developed by our Queens/Nassau NAMI affiliate in conjunction with our national and state offices to teach students in health classes about serious mental illness. They are called "Breaking the Silence: Teaching the Next Generation About Mental Illness" and are available for upper elementary grades, middle school, and high school. They include a scripted lesson which can be taught by people who know very little about mental illness, suggested follow-up activities, a bibliography, and for elementary school and high school, posters which teach the warning signs of mental illness. The middle school package includes an anti-stigma board game called, The Brain Game, which can be adapted for use on all levels. The packet of information you received today includes an order form of these materials, which are available through NAMI/NYS by calling 1-800-950-FACT or NAMI Queens/ Nassau. We hope you will encourage your health teachers to use them, so that people like my son Douglas and the millions of others like him who suffer from brain disorders will no longer have to face a wall of ignorance.
Janet Susin delivered the above speech at a School for Educators Conference sponsored by LIJ/Schneider Children's Hospital this year. Reprinted with kind permission from PATHWAYS, the Newsletter of NAMI Queens/Nassau, April 1999 issue.