Communication

Is there a more wondrous or important characteristic of a human being than his simple ability to express himself to his fellow human beings?

Probably not.

When a human being loses his ability to communicate, or fails to acquire this ability due to brain injury, he loses his most precious passport to the affection and respect of his family, his friends, and his community.

Those of us who can speak cannot imagine a world where everyone speaks and we only listen. All human passions - love, tenderness, appreciation, kindness, humor, rage, surprise, agony, fear, hope - we not only feel but have the freedom to express. We can exercise that freedom every minute of the day, and we do.

These communications form the complex of virtually all our interactions with our loved ones, our friends, and our society. Our language gives us the ability to define ourselves, and this definition forms the very basis of our existence.

Language problems are almost universal among brain-injured children. Severely and profoundly injured children usually have very large language problems. These difficulties range from a complete inability to make sounds of any kind all the way to children who can talk but cannot be understood because their articulation is so poor.

In the absence of clear, articulate expression there is no definition of the child for us to evaluate. Instead, everyone who surrounds such a child must create his own definition of who that child really is.

Since adults already have a tendency to greatly underestimate the intellectual abilities of a child, it is not surprising that when that child happens to be brain-injured and has little means of direct communication we grossly underestimate his true ability to understand.

The dilemma for such a child is enormous.

We know that the profoundly midbrain-injured child who is totally paralyzed is quite literally trapped in a cage the exact size of his own body. This is a monstrous prison. Considering his incarceration, the program - as rigorous and as heroic as it may be - pales in comparison to the magnitude of the child’s willingness to try, to fight, and finally to win. He deserves our love and our respect, and he gets it.

But there is a prison even more monstrous. There is another kind of child who is hurt both in the midbrain and in the cortex. The world still uses a symptomatic name to describe him - he is called “autistic”. He is not paralyzed, but oddly enough he, too, is trapped in a cage the exact size of his own body. His is not so much a prison as it is a hell.

Like the midbrain-injured child, this child is bright. No, he is very, very bright. But unlike the midbrain-injured child, who can charm and cajole and con and amuse with a simple smile or a knowing look, this child has no such option. He can move his body, but his tremendous intellect is trapped in a prison the size of his own cortex. In this prison there are no visitors to charm or cajole or con or amuse. Until we fix him he is in permanent solitary confinement.

Like his midbrain-injured brother, this child’s willingness to try, to fight, and finally to win is heroic, and like the midbrain-injured he deserves our love and our respect. Now we know how to help him. Through facilitated communication we can open the door to communication.

by Janet Doman
IN-REPORT Editor